Tuesday, October 26, 2010

Getting Through Another IEP

The IEP went quite well, actually. I was armed with data on Apraxia and likely comorbidity issues in education (phonological issues, dyslexia, dysgraphia...to name a few) , as well as the names and details of some tests which could be useful to determine his need and eligibility for services within the public school district.

His new and fabulous teacher, the principal, the new SLP, and I were all present.
We started with talking about Bubbles strengths. This is a typical component of IEP's in general, both in part to remind everyone of the child's strengths, and also to delay the inevitable delivery of something a parent may resist. The 'offer' of the school district for services is always the last thing to happen, right before the negotiations begin, that is.

Anyway, we all managed to have a peaceful and cohesive meeting. I didn't know how the principal would address this, and an IEP meeting can tell a parent a lot about a principal....so there was tension on my part leading up to this meeting. So much was at stake, having switched schools for the children this year and the unknown factor was high until I had some administrative proof.

I did remind the SLP at one point that Apraxia was not a developmental delay, because without treatment, it would not 'correct itself', nor would he simply one day 'catch up'. I was happy to hear the principal concur.

His K teacher talked about how he is so very young and we compared his abilities to his peers. We all agreed (principal included) that he should not really be in K this year, and anything he did this year (his first year of 2 years of K) was gravy, so there is no stressful performance emphasis on meeting K standards by the end of the year. The Independent Study program he is in (3 days classroom, 2 days home school) facilitates this better than we could ever have hoped. He is in a class with an 8:1 ratio. Better than private school. Another reason I really wanted this IEP to go well.

I asked about occupational therapy to work with his fine motor deficits. The boy can put together legos, but can't control a pencil well enough to write letters. The principal agreed to have him observed by the OT in the next few weeks. Wow. That was easy.

SLP suggested a 50% reduction in services, which I had been prepared to hear. I explained that, because he had such a rich history of speech therapy services, and because I was equipped to support his services with supplemental home program, I would agree to that reduction.

But then it got a little tense when the SLP pointed out that she had checked the 'individual' box as well as the 'group' box. Which is when I said that I was not at all prepared to agree to this aspect of the IEP, because we were already compromising the amount of time he had been receiving, and it would be too much of a change in meeting his needs. I felt strongly that being in a group would compromise the level of attention he needs and would be getting.

SLP suggested that Bubbles had received individual therapy in the years prior to K because the school didn't have anyone who could provide that therapy for him before age five. I suggested it was in fact, because the principal of that school district had acknowledged the severity of his diagnosis (moderate to severe apraxia) and had allotted him the recommended number of hours (3 per week) for a child that age with that disability. Which was, in fact, exactly why he is doing so well now.

The SLP even pointed out that he would need to show a delay to qualify for any change in services. Which is when I got a little pitbull. But I took a deep breath, dipped inside for some more reserve honey, and said, "But that's not what anyone at this school wants for Bubbles, is it?"

At this point the principal stepped in and said, "It sounds like Gwendomama is clear that Bubbles is not ready to transition into speech therapy in a group setting. I think that sounds fine. If you can ever fit him into an existing group then perhaps we can supplement his 1/2 hour per week with trying that out and we would then see if he can work well in a group. But right now he still needs the 1/2 hour of individual therapy."
I sighed heavily with relief and the SLP sputtered something about her full schedule, which pissed me off because hello? Bubbles' needs should not be compromised by her limited availability.

And that's the truth for any school district, remember that for me, will you?

I think I did pretty well, and I know Bubbles is going to do pretty well too!

Monday, October 25, 2010

Apraxia in Action; Continued....

Tomorrow is Bubbles' first IEP at his new school. In fact, it will be his first IEP in elementary school. It's late October, and I still try and wrap my brain around the twisted fact that he ended up in kindergarten this year.

I've already been warned that he will lose services. The school, bless their budget-deficient little soul, set me up nicely by suggesting at first that he will no longer qualify for any speech services, as a result of having made so much progress in the past three years. Now, I love this school, and I get it that they have no money, but there is no way I am going to accept that he is cured of Apraxia merely because they don't have funding for speech therapy.
I had a blunt talk with the SLP and let her know that I do not like surprises, and would hope to not expect any at the upcoming IEP.
To her credit, she called me last week making her recommendations. I cringed at the number of times she ignored my 'motor planning' questions and cringed again each time she peppered her recommendations with the phrase 'articulation disorder'.

(Sorry for shouting. But it's not.) (Inability to articulate is a SYMPTOM.)

Anyway....I don't expect to be surprised when they tell me they are cutting his services in half, down to 1/2 hour session per week.
Saying he is 'almost all better' would feel great.....if it were actually true.
But the truth is, California is broke, and the educational system is broken. I hope some administration employees in Sacramento are having a lovely lunch out today. I bet the tab could be close to $90! Which is EXACTLY what an hour of private speech therapy costs. The VERY SAME speech therapy which my child is about to lose.

With that said, I am able to push aside the doom and gloom and for a little while the oh-so-many-concerns I have about his future learning challenges.
Why? Because I am grateful to have this child beyond belief. I am grateful to be able to watch the layers of his intelligence be revealed as his expressive language capacity increases. It is the most amazing process. It's not developmental, technically, because he is being treated for something which would not correct itself with a delay. But it is developmental as I watch him achieve communication milestones and make the connections.
His brain appears to be working overtime as his capacity for intelligible speech increases.

This weekend he came running up to me.
"Mommy!!! Mommy!!!! LISTEN TO THIS!!!! 'Plane' you go somewhere! 'Playing' you have fun! 'Plain', with nothing on it. OH MY GOD!!!"

OMG indeed, little man. You managed to blow my mind yet again.

Friday, October 08, 2010

He Exists in Pictures and My Mind

I have never ever seen a video of Elijah since he died.
Not once.

I have photos of him; they are flat and one dimensional, but they definitely look like Elijah. When I look at those pictures, he is as beautiful as I remember him.
And my arms have a memory of holding him; that memory is in my body forever.
If I imagine holding him, I can also just as easily remember how he preferred my left shoulder, and my neck will crook just a tiny bit to the left, and I can remember how he leaned in to touch my head, and the feel of his breath on my ear.
I remember these things, and they are gifts.

And, although I remember him using his voice, I cannot remember his voice. I know that he sang, but I cannot recall his song.

For years the videos were packed away, the thought of viewing them too painful to pursue to fruition. Two years ago, I asked Xdude to please tell me where they were; I was finally ready to view them and I wanted to make digital copies of the videotapes. I had waited so long, I was sure I was ready. I was achingly desperate to see, hear, watch, and yes, probably cry.
He wouldn't get them out, he wouldn't tell me where they had been hidden. He claimed it was because I was going to 'take them somewhere unsafe' to get digital copies. He said he would do it himself. I knew he wouldn't because he wasn't ready to see the videos of our dead child when he was alive. Which was fine. I didn't ask him to watch them.
I wanted to watch them.

Last Spring, about a month before I moved from the house we had shared for eight years, I asked him if there was anything he wanted me to look for when moving out - anything he particularly wanted. It was a peaceful gesture, and I volunteered it. It was reasonable to assume that there were probably some things he missed when moving out in a one day rush that previous Summer.
I really would have just given him anything important if he needed it.
He responded that he would like a hard drive, promised a copy to me, and said he would give me 'some of the videos of Elijah in return'.

My eyes slid out of their sockets and landed in a pile of mush in front of screen. Had he just offered to give me 'some of the videos' of our dead son, IF I gave him what he wanted?
Did he really imply that he would be holding those videos hostage until I handed over the correct ransom?

I couldn't believe it. I had just offered to give him something, and he gave me instead, a glimpse into how entitled he feels to play games with me. Still.
Which I guess isn't a complete shock.
But to use our dead son as the prizewinning carrot?

It took me this many months to write about it, because I thought nothing could surprise me anymore, and because it makes me ill. Which is what I am feeling right now.

Tuesday, October 05, 2010

The Apraxia Letter

The following letter was composed to inform Bubbles' class parents, all of whom are required to volunteer or teach in the classroom, about Apraxia and the quirks which accompany this affliction:

Hi Parents;
I have met most of you, and I am Bubbles' mama, Gwendomama. We were (lucky) last minute-ers to sign on to the I/S Kinder program, so I feel like I am still catching up with information, and there was so much to digest in those first two meetings, that I neglected to share what I intended to cover when first gathering with our wonderful group of parents.
I have had the opportunity to chat with some of you in person and explain to you that Bubbles not only has a late Fall birthday and will do 2 years of kindergarten, but he also has Apraxia.
I wanted you to have the option to read this if you wish to learn just a bit more about Childhood Apraxia of Speech, which is the fancy term for Bubbles' speech delay (which at this point, generally presents as halted, delayed articulation, phonological disorder, and word retrieval confusion). Which, in short, is why Bubbles sounds just a little funny.
CAS? Apraxia?
What does this mean? You can read more about it here, and/or you can read my very short, 3 bullet synopsis below. Either way, you will have a deeper understanding of Apraxia than you did 5 minutes ago, and that will surely impress your friends.

My three favorite quick descriptions of this complex 'oral motor planning and neuro-processing disorder' are as follows:
  • Early on in his Dx, I heard someone describe the affliction of Apraxia as: Not the child you want coming to tell you that the house is on fire.
  • My impression of watching Bubbles struggle with Apraxia is: You know how it feels to have something 'on the tip of your tongue' and not be able to access it? That's how Bubbles feels all of the time.
  • But the most amazing description of Bubbles' frustration is best coined by Bubbles himself, who said to his speech therapist: The words is there. They is just all tangled up on a string in my throat.

So....Bubbles has to take time to get his words out, and he sometimes gets stuck. For instance, he will exchange words for something that sounds familiar to him if it is not a familiar word.

In the past month alone, I have had to interpret: 'gadget' for 'shadow', 'indolin' for 'Indian', and 'helicopter' for 'elevator'. Just today he asked me why are there clones in the movie, 'The Polar Express'?
Of course I responded, "What? Clones? What clones?"
And he said, "Yes, they all have those Christmas hats and they love the Santa!"
I realized right away that he meant 'elves'. I don't know why he used that word....it may have been some combo of 'clowns' and 'cones' (hats) and/or him hearing the word 'clones' recently (has a 9 yr old sister)...all I know is that I have learned to think outside the linguistic box when interpreting him.
Oddly, other children have often easily interpreted for him, which is particularly lovely because at this age, there is not one speck of judgment among them when this is done. It is, in my mind, an act of humanity and an insightful gift into who our children are at this young age. On a recent drive home, he was desperately trying to tell me something.
"BISMAL!!" he kept saying. 'Dismal? Abismal?' I kept asking him for any close approximation but could not figure out what he was saying. Finally, our five year old carpool mate spoke up. She said, "I know what he's saying. It's 'invisible'"
Bubbles responded by saying, "Yes!!! INBISDIMAL!!! Ank you, friend!!"
That is a classic Bubbles moment.

The words are there. He just can't always get them out intelligibly or in the syntactically correct order.

Another bizarre thing about Apraxia is that the oral motor delay component means so much more than you can see. Bubbles has very selective eating habits, which is very frustrating for the parent of a teeny tiny skinny boy, but understanding the oral motor issue does help to explain his pickiness. It takes about 14 coordinated motions with the tongue to swallow any bite of food. When he was almost three, Bubbles still could not make about half of those motions. Which explains why he would never eat baby food (would have choked him) and would only accept dry, quickly dissolving foods. It also explains why he could not string 4 words together before intensive speech therapy.....his mouth could not actually make those sounds.
It also explains his extreme pickiness which has become a bad habit.

FYI, Bubbles, if you are the volunteering parent, will ALWAYS choose the 'meat' option, even if he cannot tell you this. He will approach any new food with caution and perhaps rejection, but because of his history, I know that being surrounded by his peers eating diverse food offerings, eventually he will try new things, which is why I am adamant about not packing him a different lunch. If he does not eat, he will when he comes home. It is more important to me to know that sharing lunch with his peers is great exposure, and even therapeutic.

So...that's the optional glimpse into the world of Apraxia.

And by the way, I cannot wait to play with our children on Tuesday - they are so fun in music class.....I love this group of ours!

Thanks for reading.

Monday, October 04, 2010


I have been having these particularly disturbing recurring dreams. In these dreams, I am pulling sticky gum? or tar?, or gritty-pebbly putty out of my mouth.

Although I pull it out in clumps and strings, I can't get it all out; I wake up worrying about dental disasters (which is not a completely abstract concept, considering reality), although these dreams do not coincide with any Real Dental Disasters.

Everything I have researched about this type of dream has pointed to the fact that I am feeling or being silenced.
I may be allowing this, but I have been silenced. I have chosen to be allowed to be silenced.

Okay. I will investigate this.

These dreams are stifling me.
They are silencing me.

I have a problem with being silenced.
And yes, I have a problem with being controlled, after taking many careful steps to reclaim my own life.

I will not be silenced.

Which is why I am putting myself back online.

Why I took myself 'offline' is another story, and that will have to wait.