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Wednesday, July 25, 2012

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!!

Sunday, July 1, 2012

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!