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Wednesday, August 29, 2012

Doubt



The LAUSD assessment reports on Miles came in and they are making me doubt myself and everything I know about him.  The thing is, the reports are not really that bad.  They give a somewhat accurate portrayal of Miles on the day of his assessment. Of course, it was not Miles at his best and he didn't show them all that he can do, so it would be impossible for them to imagine what he is capable of doing.  According to the IEP team, Miles should be placed in a PreSchool Intensive program (PSI).  Basically, a preschool for kids with moderate to severe disabilities, who don't mix with the general ed population.  What??  Seriously??  This is Miles, the kid who's been going to a typical daycare since he was six months old!  The kid who plays the drums and reads books, loves to dance and play jokes on us.  The stubborn, wilfull kid who knows how to get his way.  So am I kidding myself?  Is Miles really that cognitively delayed?  Have I been lying to myself all this time because I'm his mom and I don't want to believe he's that delayed and unable to keep up in a classroom setting?  Why am I letting these people and their stupid reports get to me???  I know Miles.  I know he understands more than we think.  I know he's got more words than he chooses to use.  I know that he loves being around typical kids and imitating them.  I know that he wants to and needs to be treated just like any other kid, that's how he will thrive. Agh!!!!   I hate this situation for having power over me!!!!

We checked out the preschool that they recommended for Miles and it's actually a wonderful setting with a loving, nurturing teacher....for kids who have more severe disabilities than Miles.  Only one of the kids in the class was verbal.  None of the kids really interacted with each other.  There was nobody there for Miles to model.  It is a great program for the kids who need it.  Miles needs something else.  Then we checked out a PreSchool Mixed program (PSM); for kids with mild to moderate disabilities.  Also a great teacher with a nice little classroom and the kids were definitely more functional, but they were still kept separate from the general ed population, never to mix with the typical kids.  That's not okay for us.  That's not okay for Miles.

I've been feeling very emotional all week as we visit the schools, read the reports, and prepare for Miles's IEP tomorrow.  The situation is even more emotional for me because this is also Miles's last week of therapies, so we are having to say goodbye to his amazing team of the past 2 1/2 years!!  His birthday is on Saturday and I'm supposed to be planning a birthday party.  I booked my first big gig in a while, so I've been working and running around like a maniac.  Miles has been acting like a little shit head, just being incredibly difficult to handle, making me doubt myself even more.  Oh...and the stupid washing machine broke so we have a pile of dirty clothes accumulating and making me feel even crazier!!!  I'm a woman on the edge, a cookie ready to crumble....don't ask me any questions, let me just get through the next few days please!!!!!!  When I dropped Miles off at school today, one of the teachers asked me how I was doing and I nearly cried while saying, "fine, just fine".

Why is it that big things always culminate at the same time?!  It couldn't just be Miles's 3rd birthday and the end of his therapies.   Nooooo,  it had to be the same freaking week that all these other big things in life are happening!!  Every damn day is a challenge.  Every single day there is a meltdown at home.  Zach melted down last night around the kid's bedtime, so he went for a walk with Miles to cool off while I put Ella to bed.  When he returned, Miles was fast asleep.  So then it was my turn to take a walk.  I filled a large glass of wine and set out to see the sunset...and amazing one last night.  As I stood there watching the colors on the clouds turn from orange to pink to red, I saw my place in this large Universe.  I am tiny, a tiny little piece of the puzzle, yet an integral part of the puzzle. I fit in this puzzle perfectly, just as Miles and Ella and Zach and everyone does.  We are all here to ebb and flow with the energy that makes the world go round.  And if I just allow myself to go with the flow and lead from my truth, all will work out as it's supposed to.  That's what I believe.

So tomorrow morning, as we face the IEP team and start negotiating with them, I will hold on to the truth:  that Miles deserves the best education and environment possible for him to succeed. Even if he does turn out to have moderate to severe cognitive abilities, we can still give him an amazing environment that will propel him forward, not stunt his growth.  LAUSD doesn't have that environment for Miles.  We found it at United Children's and that's where he'll stay.

Oh....and I do have to mention that the only saving grace on this otherwise maddening week has been that Miss Ella Grace has slept for at least 11 hours straight every night, for the past 4 nights!  It's like she knew we needed a little brake.  So thank you Ella, for letting us rest our weary heads at night....because mama and papa sure need it!

Monday, August 20, 2012

LAUSD Assessment: the blow by blow

The night before Miles' first LAUSD assessment, Zach and I discussed our approach.  First off, we made a pact to be calm and relaxed the next morning so that Miles could feed off our peaceful energy not our frantic one.  We made a list of Miles' strengths and weaknesses, our concerns for his future, adjectives that describe him and what we would like him to work on.  We talked about giving them the information they need without too much elaboration, so it would be just enough.  Not too much, not too little.  We left everything packed the night before so that we could leave early without much rushing around.  Ella's sitter was set to arrive at 7:30am and we would be on our way by 7:45 the latest.

That morning, everything was going as planned.  Miles was in a good mood, we were ready to leave but for some reason we didn't get out of the house until almost 8am.  I let my anxiety get to me and started snapping at Zach in the car.  I wanted to stop for a coffee but now we had no time.  WTF!!

Zach: How was I supposed to know you wanted coffee?
Me:  Because I have coffee every morning.  Don't you want coffee?
Zach:  No, not today.  It will make me talk too much and you told me not to talk so much.
Me:  Ugh!  Sigh!

Silence

Me:  I'm sorry, we said we wouldn't argue this morning.  My bad.
Zach:  It's okay.  I didn't know you wanted coffee.
Me:  How would you know, I didn't tell you.
Zach:  It's okay.
Me:  Yeah, it's cool.  I'll have coffee later.

Fight averted.  Phew!  Miles was chillin' in the back seat, playing with his dinosaur puppet.

 We arrived at the school parking lot with a few minutes to spare.  We made our way to room 137 where the speech therapist and school psychologist were setting up.  While we waited for the LAUSD coordinator, the occupational therapist, physical therapist and adaptive PE teacher, they decided to start with our interview.  So we sat down and started the process.  Meanwhile, Miles walked into the classroom, full of new toys and kid games and went straight to work- playing! 

Okay, so here's Miles, a very busy toddler, hard at play within the first few minutes of getting to this new environment.  You'd think these evaluators would engage with him right away: watch him, play with him, ask him questions.  You know, evaluate him.  Because he's a toddler, a ticking time bomb.  His attention span will only last for a set amount of time and once it's gone it's meltdown city!  Instead they start asking us questions about him, about us, his history, strengths, weaknesses, stuff pertaining to speech and development, every now and then glancing at him.  The speech therapist made a few feeble attempts at communicating with him.  Then back to questions for us.  Miles is playing with some animals and starts pointing, I ask him what he wants, in Spanish.  Oh shit, monkey wrench!!

The speech therapist shoots me a hard look, then--

Speech Therapist:  You speak to him in Spanish?
Me:  Yes.
Speech Therapist:  You can't do that.  You need to pick a language!!
Me:  (quizzical look, what?)
Speech Therapist:  You can't speak to him in two languages!!!!

Honestly I was stunned and couldn't think fast enough to respond.  But Zach could.

Zach:  We don't care what you think, we are speaking to him in both languages and that's our choice!!
Speech Therapist:  It's going to be harder for him to learn to speak!
Zach:  Half of you people say one thing the other half say something else, so obviously you don't really  
           know anything.  It's going to take him longer to speak regardless and we'd like him to be able to at least  
           understand Spanish.  He's our son and it's our choice and this is not up for discussion.

(Uncomfortable Silence)

Holy shit!  Go Zach!!
At this point my mind finally caught up with the conversation, so I cut the silence with--

Me: Look, I speak in Spanish, it's who I am, I'm not going to change that.  We also have a daughter and we
       want her to speak Spanish as well, so I'm speaking in Spanish to my kids.  I'm not treating Miles any
       different because he has Ds.

At this point it was the speech therapist who had a stunned look in her face, but she shut up about it.
Good.  Lets move on.

Meanwhile the OT and adaptive PE teacher had shown up.  They decide to take him outside to test his physical skills.  Miles is delighted, he loves playing outside and with a ball!  Forget about it, he's pysched!  Inside, the questions continue.

They come back inside, Miles isn't too happy about it, but he finds some other toys to play with.  Finally, the speech therapist and psychologist try to engage him in some focused play with blocks and puzzles but Miles isn't having it. He wants to play outside and ooh, wait, the PT shows up with a really cool car!  He wants to play with that.  Basically, this goes on for a while.  Now that it's been about 45 mins, the speech therapist, phychologist and OT are trying to get Miles to sit at a table and play with them but he will not cooperate.  He runs away, throws himself on the floor and goes into full tantrum mode.

He's hungry and tired. It's almost 10am and we've been here for an hour, how on earth do they expect him to perform now??  I get him his snacks, which he sits and eats and afterwards, he plays a little bit more with them.

To make a long story longer, the whole thing was just goofy and felt a little bit like a waste of time.  They did it all wrong.  They should have played with Miles inside while he had the focus, taken him outside when he couldn't be contained anymore and asked us questions while he was outside.  Each one of these ladies were odd in their own way, from the psychologist who was way too stern for someone who supposedly works with children.  She sacred me, imagine how she makes kids feel!  To the funny looking PT with her fake wig and too much make-up on.  The adaptive PE teacher was super nice, with her bird's nest hair and sweatpants, but what she saw Miles do?  I have no idea.  The OT was like a quiet mouse in the corner, also very sweet but she seemed afraid of speaking out loud.  And the speech therapist, beside our little Spanish encounter, was very nice.  I mean really, they all seemed like nice people but other than the PE teacher, I don't think any of them ever really work with kids.  They evaluate them, but they are not clinicians.  They generate reports that create an educational plan for children with special needs.  That's what they do.  Are they good at their job?  Well, I'm sure they do it all the time but I couldn't tell if they were any good.  I can tell you that they were disorganized and scattered and not paying attention and how they will successfully evaluate hims beats the shit out of me!

But apparently this is all normal.  Now that I've spoken to other parents who've gone through these evaluations, this is the way they're done!  And it's why we, the parents, end up having to hire advocates and lawyers to help us get the Individualized Educational Program that we know our kids deserve.  I am really curious as to what IEP these evaluators will  device for Miles because the whole evaluation was kind of a joke.  The psychologist is set to visit Miles in his school this week and our IEP is scheduled for next week, just two days before Miles' 3rd birthday.  We have retained a lawyer who will accompany us to his IEP and make sure that things go smoothly.  Basically what we want is for LAUSD to pay for Miles to go to United Children's Learning Academy, the school he is currently attending and where we know he will flourish as an individual. 

So stay tuned and I will let you know how it goes!!




Wednesday, August 1, 2012

Miles Is In!!

This morning I dedicated my yoga practice to Miles....and I cried.  I cried because he works so hard.  He is fearless and truly happy to be alive.  And that's the spirit I want to bring to my practice, to my life.
I cried out of happiness and love.  I cried because he's in my life.  He's my son and I'm so fortunate to go on this journey with him.  So fortunate for the lessons that I've learned and will learn from him. 
Today's lesson is that hard work and practice does pay off, in any area of life.

Since he was born, Miles has worked hard to achieve everything.  The past few months have been particularly difficult, full of changes: new sister, new school, constant change in schedule, lots of testing and he has done a wonderful job of keeping up with it all.  It's been a lot on him physically and emotionally.  At times he has responded by being more needy, throwing tantrums, regressing in some areas (like throwing food on the floor!), but he's also become quite a dancer, he's running and can almost almost jump!  Sometimes he's rough with his sister, but he Loves her and wants to play with her.  He gets carried away with his excitement, his love.  He shares his toys and has been teaching her how to play the drums and the xylophone.  (Yes, it's a cute sight!).   So as difficult as it's been, he is still kicking ass and I'm so proud of him. 

I am particularly proud because this morning I was told that he is officially accepted into the school we want him to attend.  A wonderful school he's been attending and loving during their Summer program.  He made it in!!  He charmed his way and showed his worth and they want him around for good! My sweet little dude, with his Big personality worked hard and made it in.  Now we have to fight for him.  We need to convince LAUSD that that's where he needs to be.  I've already placed a call to a Special Needs Education Lawyer who comes highly recommended. So now we need to kick ass for him.

Here we go, let the games begin!!!