Siblings

Ells started saying"wow" last week.  She's 7 1/2 months old.  Miles first said "wow" when he was 2 years old!  She can also say mama and dada.  I don't think she realizes we are mama and dada, but she can say the words.  Again, she's 7 1/2 months old.  This is actually quite normal for a typical baby her age.  I didn't know that.  Until now, that wasn't my experience, so everything she does is like "wow" to us.  She's not in therapy or special classes for anything and here she is, picking things up just from her surroundings!  It's totally mind-blowing!

Ella & Miles August 2012

Ella can clap her hands and play peek-a-boo, she imitates our intonations when we say things like "hello".  She's trying to pull herself up onto the sofa and crawl all over me.  She is very ticklish and loves to play tickle with Miles.  She eats pureed foods, but is so ready for our food that she tries to steal it from our plates, hands and sometimes mouths when we're eating!  Ella's not particularly interested in other little babies her age, no sir, she wants to hang with the big kids.  When we're around other kids, she can't take her eyes off them running around, playing with balls, dancing.  She wants to do what they're doing, she wants to run around, dance and play catch.  She loves spending time with Miles, even if he does knock her on her down at least twice a day.  She sometimes cries, but mostly she thinks it's fun and plays rough right back with him.  It's amazing to see them together.  Every now and then, I catch Miles staring at Ella while she's practicing funny sounds or trying to catch her balance and failing, and he will laugh this full out, adult belly laugh at her.  She cracks him up and he does the same to her.  They both have this hilarious sense of humor and a joy that's beautiful and contagious.  I love them and I love that they have each other.

As I see their relationship develop, I can't help but think of my own relationship with my siblings.  When we were real little, my sister and I would dress my brother up like a girl...and he would go along with it.  When we were older, we'd sit and play with his Hot Wheels or have a Monopoly match that lasted all weekend.  As teenagers, we argued and had jealous moments, but no matter what, we stood up for each other in the playground and at school.  My sister would treat me as badly as she wanted, but if anybody said anything mean to me, they'd have to deal with her wrath!  As adults, we love and respect each other even if we don't always see eye to eye.  Not all siblings have such close relationships, so I feel fortunate that we do.  They're not just my siblings, they're my best friends.  I also have a stepbrother and sister in Panama and two stepbrothers in Massachusetts, and though we didn't grow up together full time, I feel a strong kinship with them as well.  I  think that sharing parents is a pretty strong bond, whether related by blood or not.  I mean, who else can truly understand the depth of your parental issues but another sibling!

I know that Miles and Ella will learn a lot from each other throughout their lives.  I can already see their little wheels turning when they're together.  I also know that their relationship will be different in a way that I can't quite comprehend.  But I do hope that they will love, trust and respect each other.  I hope that they can confide in each other and that one day, when they're older, they can sit around with a bottle of wine and talk shit about mom and dad while understanding that when we messed them up, we did so because we're human.  Imperfect humans who love them more than anything in the world!

Me, my bro & my sis- 1980

Me, my bro & my sis- 1997

Little Big Boy

The last two weeks were incredibly intense leading up to Miles's IEP, his 3rd birthday and the end of all his Early Intervention therapies.  I was an emotional mess, full of fears, anxieties, and sadness.  Sadness over saying goodbye to his early intervention team, fear about the unknown, anxiety over the IEP.  As always, I drive myself nuts for no reason.  The IEP turned out very well.  The meeting itself was incredibly long and mostly boring, but I was happily surprised to hear that Miles's assessments were very accurate and all the goals and recommendations that were made were exactly what Zach and I wanted.  The psychologist's assessment of Miles was so spot on and positive that it was another reminder not to judge a book by its cover.  At the evaluation, she seemed like such a mean, cold person who had never worked with children.  She had a million questions and barely engaged with Miles so I was sure her assessment would be negative.  I was so wrong.  She also visited him at his school and gave glowing reviews of the school and his progress there.  I think that if she could, she would just straight up recommend to keep him there.  It was obvious that all the LAUSD therapists who evaluated him believe Miles is in the right school environment, but since they work for LAUSD and they have to recommend an LAUSD  program, they couldn't actually tell us to keep him at his school.  At least, not on the record!

Miles collecting water at the beach on his birthday.

So what I learned or really saw first hand at this meeting, is that it is all about money.  Bottom line.  All we have to prove is that paying for our son to go to United Children's will be cheaper for LAUSD than us asking for a one on one aide at the public preschool.  And if we have the money for a lawyer to do all the paperwork and phone calling, then even better.  Yep, it's about the money.  I mean, I knew it, but it was so obvious at the meeting.  Everyone present knew that we weren't signing anything and that we were going to move forward and that we are doing the best thing for our child.  But everyone present had to cover their asses from their bosses so they had to pretend to convince us to stay within LAUSD.  Everyone played their little part in the game and when the meeting was adjourned and we were off the record, they all wished us luck and said that we were doing the best for our child.  Yeah...that's how it went.  Crazy.....

Once the meeting was over on Thursday, I felt a huge weight lifted.  Miles had his last occupational therapy session on Friday and both the OT and I cried bittersweet tears. I realized that I'm the one that's had a real tough time with Miles's transition to preschool.  Sure, Miles is in a new environment, but he seems so happy there that it's as if he's been there forever.  But for me, it was hard to let go of my connection and need for his therapists, their support and even their friendship.  Miles turning 3 signifies a huge shift.  He's not a baby anymore, he's a big boy, a toddler.  My baby's growing!!  And on Saturday we celebrated his birthday doing all his favorite things:  playing at the beach, a long nap, dinner at Vegan Glory, his favorite restaurant, and finishing the night with his favorite movie, Toy Story.  We sang Happy Birthday three times on Saturday and each time Miles blew his candles and clapped with such joy and excitement.  This was the first year Miles could actually blow his candles and I think he understood full well that it was his birthday.  Amazing.  Love!

Miles & his speech therapist naming animals.

Miles & his physical therapist playing around.

Miles & his occupational therapist having fun!

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!

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!!

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!!!

First Assessment

Miles excited about going to school!

There are so many wonderful people who have helped us tremendously with Miles during the last two and a half years.  We've been blessed with a team of caring and knowledgeable therapists for Miles.  His physical therapist, occupational therapists, speech, infant stimulation teacher and all his preschool teachers have nurtured Miles' independence and progress and they've taught us how to help him in so many ways.  In just about a month, Miles will turn 3 years old and he will be done with Early Intervention and therefore will lose all these amazing therapists.  Although I'm looking forward to a more manageable schedule, I'm sad to see all these people go.  They've become a part of our family.  We sit and talk about life not just Miles.  I've gotten to know these people for the past two years and they have helped us prepare Miles for his next step:  entering LA Unified School District.   What does that mean?  A lot!

Once Early Intervention services are over (when a child turns 3), they get turned over to the public school system, or LAUSD.  It becomes LAUSD's responsibility to provide an environment in which our children can learn and grow with the means necessary, whether it be special ed teachers, classrooms and facilities.   This way our kids can be mainstreamed, learning in an environment with typical children.  Of course there are private schools out there that are just for kids with special needs, but not all parents can afford them. And they're not the right place for some children.  For example, Miles thrives in an environment with typical children because he does so much modeling of his peers.  Miles went "pee pee in the potty" today.  Why?  Because he's been watching the kids in his school use the potty.  In his old school, where all the kids had special needs and very few were potty trained, Miles wasn't exposed to it as much and so it didn't interest him.  That's just one of the many things I know he'll learn from being in a typical environment.

Unfortunately, there's a lot of bullshit....pardon me, bureaucracy,  that goes along with putting our special needs child in the public school system.   All kids with special needs going into public school must first get evaluated to asses their skill level in a multiple of areas.  The school system then uses this to create an Individualized Educational Program (IEP).  The IEP will determine their placement in school (whether it's an inclusive environment or not), their goals and if they are eligible for extra therapies such as speech or physical therapy.  For their whole school career, our children will be known as "kids with an IEP".  In a perfect world, their teachers would actually look at their goals and try to achieve them, they would receive the therapies that they need to succeed and they would be placed in the appropriate programs for them to flourish.  We don't live in a perfect world and it's a broken system.  So this is where shit gets real for us!! We are leaving the soft cuddly world of Early Intervention and entering the the hard, tough world of IEP's.  We've had it pretty easy until now and we're bracing for a fight.  A fight for Miles to receive the right education that he deserves and that will best poise him to succeed in life.  So far, we have not found that education in the LAUSD, we found it in a non-public school (a private school who accepts kids with IEP's) and it will be our job to get LAUSD to pay for it.

I'll explain more about this as it comes up, since I'm sure I'll be writing a lot about it in the next few months.  Suffice to say, our first big step in this major transition is coming up tomorrow with Miles' first major assessment by LAUSD.  Tomorrow morning at 8:30am, Miles is being evaluated by a speech therapist, an occupational therapist, a physical therapist, a psychologist, a behaviorist and an adaptive PE teacher.  Yep.....six different people are going to take about an hour and a half to "test" Miles and ask us questions about Miles and from that hour and a half they will come up with his IEP.  Never mind that he's a toddler with a 20 minute attention span who doesn't like to "perform" on command and might or might not show off his skills tomorrow.  Yep, that's how it works.  So as you can see, it's really up to us, the parents, to advocate for our kids because we're the ones who  actually know what they can and can't do.  It will be up to us to show LAUSD what Miles' strengths and weaknesses are and where he needs to go to school to succeed.  It's going to be a fight but we will not give up.  Miles deserves it.

The state has categorized Miles under the label of "Mental Retardation".  Miles is soooooooo much more than that.  He has Down syndrome, which means it will take him longer to meet most skills and goals, it doesn't mean he's dumb or incapable.  He is actually the complete opposite of that:  curious, intelligent, funny, cunning, interested, smart.    The people who are supposed to be providing him with his education for the next 15 years consider him mentally retarded...there's something wrong with the system.  And we have to make it right.

I am nervous about tomorrow but I know I don't need to be because Miles will be himself and regardless of how these people evaluate him, we will make sure that Miles gets the best!!

They Grow So Fast

Ella Bean....as we call her

When I was pregnant with Miles I signed up for one of those websites that gives you a weekly rundown of baby's development in utero.  I used to follow it religiously.  I looked forward to each new week and finding out how many inches baby should be and what organs were developing at the time well so that I would have a very healthy baby.  It was like a little ritual I had.

Once the baby is born, the website continues sending you weekly emails with your baby's progress, like "Your baby is 4 weeks old.  At this point your baby should be starting to....".  When Miles was born I couldn't bare to read those weekly emails.  I was angry at them, angry that they only included milestones and development for a  typically developing child.  It was too painful reading where Miles "would" or "should" be if he didn't have Down syndrome.  I remember even crying once as I read one of those weekly updates.  That's when I took myself off their list.  No need to put myself through that crap!

Well, about three months into my pregnancy with Ella, I decided to sign up for those emails again.  I realized that I hadn't been paying as much attention to this pregnancy and where baby was in the process.  I wanted to give as much love and attention to this pregnancy as I had to my first one with Miles.  I didn't read the emails religiously and I didn't spend as much time visualizing the baby's progress, but when I had the time, I did it.  And it was nice.  Then Ella was born and everything was fine.  She is a typically developing child and I'm having a totally different experience seeing her develop.  In fact, this time it's the reverse; I actually look forward to reading the weekly emails and finding out where a baby her age should be in her development.  And the crazy thing is that she is right on target.  It blows my mind!!  A couple of months ago I read that she should be starting to make sounds and babble.  Like two days later Ella started babbling like crazy.  On another email I read that at these many weeks, she should be really interested in faces and be responding to different facial expressions.  Well Ella had already been doing that for a couple of weeks.

Mama and Ella

She turned five months today, five months!!!  And she's already turning from side to side, grabbing her toes, babbling and making all kinds of fun sounds.  She likes to reach for, kick and swat toys, stick them in her mouth and chew them up.  She loves to laugh and be entertained, she wants to try our food (and she will start eating this week!), she holds herself up so well and loves doing tummy time, she's very social and she's growing like crazy.  Every week, sometimes every day, she does something new.  And I just can't believe my eyes.  This is what our friends experienced with their kids, this is what they talked about when they said, "they're growing so fast".  Miles has obviously grown and development tremendously in his 2 years and 10 months, but it's been painstakingly slow!!  Each milestone has been a lot of hard work and tons of practice so it blows my mind to see how Ella just does things.  We don't have to teach her how to do them, she is figuring it out on her own.  And sometimes it does seem to happen from one day to the next.  I can say now that I get it, my little baby is growing so fast!!  But I am loving it.  I love that I get to have both experiences and that I am learning so much from both.  They are both exciting and amazing and a miracle.  They really are.  It sounds corny, but man, I truly feel blessed to have these two very different but totally related little angels in my life.

Miles & Ella love!