WONDERFUL WORLD, BEAUTIFUL PEOPLE
October 16, 2017

“Take a look at the world,
and the state that it’s in today,
I am sure you’ll agree,
We all could make it a better way.
With our love put together,
Ev’rybody learn to love each other,
Instead of fussing and fighting.”
Jimmy Cliff

There have been so many natural and human disasters around the world recently. It seems endless and it seems impossible to know what to do to help besides throwing whatever money one can afford to throw. But that doesn’t feel like it’s enough and it precludes any direct connection with the victims, and fall out.

After seeing the devastation in Florida, Puerto Rico and the US Virgin Islands, and the tragic aftermath of the senseless shootings in Las Vegas, or the massive loss of life in Somalia due to two car bombings, we look to one another for answers, comfort, and relief. We hold our loved ones tighter and make effort to let those we love, know we love them. We join campaigns and donate to organizations to provide assistance. We hope that our own cities won’t be the next struck by any kind of tragedy, natural or manmade. And we then we go about our lives feeling we’ve helped.

And we have. Being kind to one another is important and providing much needed funds to relief efforts is necessary. Going about our normal daily lives is also important both for our communities, our families, and us.

But there are some people who think outside the box and make effort to effect change and to impart a different kind of care, the care of action. I am blessed to know one such angel, and I want to share what she did in the wake of the Las Vegas tragedy. She made a pilgrimage of kindness to Las Vegas; where she did fifty-eight acts of kindness, encouraging each recipient to pay it forward themselves, in honor of each of the fifty-eight victims.

The deeds ranged from surprising random diners in Flaming Fajitas with gift cards to cover their meals, to presenting flowers to a senior in an assisted living home, to paying for haircuts at a local Fantastic Sam’s, to bringing pizzas to the first responding police station, to providing her cab driver with a generous tip, that he then donated to a collection his company had going to provide aid to the victims, and so much more. Each deed was accompanied by a note with the name, hometown and age of the shooting victim she was honoring. Many of the recipients had stories of their own to share with her and ideas for paying her kindness forward on their own.

She touched an entire city. She connected with people on a whole different level. The local paper caught wind of her mission and wrote about her. She shared the journey on Facebook and had lots of supporters wanting to help facilitate her passion. She took the idea of helping a step further than most of us even conceive. I know her to be one of the kindest, most caring, friendly, enthusiastic people I’ve ever met and I’ve been inspired by her since she came into my life. I aim to think outside the box like she does. I hope you will find inspiration in her actions too.

58 Acts of Kindness

HAPPY
July 17, 2017

Just found this unposted blog…Sort of relates to the one I just posted…

We’re now almost a month in and dare I say, high school is going well.  There were big bumps leading up to the first day, and a small one on the actual first day – the aide who was supposed to ride the bus with him didn’t show up in the morning so he rode alone with the driver until they picked up the next kid.  Apparently, not legal so we made the wrong decision in allowing him to go, but the aide did eventually catch up to him on the route and he arrived safely for his first day.

His schedule got sorted out and he even has a close friend from CHIME in one of his general education classes.  I think it’s helpful because having a typical, cute, volleyball team, girl chatting with you and laughing with you goes along way to inspiring other kids, kids who have not previously attended school with someone like you, to talk to you too.  He’s making friends, slowly, but it’s happening.

School friends…not necessarily the friends you do stuff with on the weekends.  That seems harder to navigate in high school, where parents are interacting in the same way and the community itself if much larger.  At this age, kids generally start to take charge of their social lives so for a kid like Cole, that becomes a bit more challenging without parental support and intervention.  We’ll see.

Overall, the school has shown a great interest in making sure he’s supported, challenged and engaged.  He really likes his main teacher, his special education teacher, who he has for several classes, and the general education teachers likewise are making efforts to ensure that he’s participating and part of their classroom community.  It’s really quite impressive.

All that said, and I’m really not complaining, but it’s still not exactly what was promised.  The LAUSD high school system is very different in terms of how it approaches kids like mine.  Inclusion is not a concept that is implemented at the high school level.  They mainstream, which is more a sink or swim concept, and where I’m thankful he’s at a school where the administration has more than a passing interest in inclusion more so than mainstreaming.

At the end of the day, this month has gone well.  He comes home tired, but happy.  He’s adjusting to the crazy schedule – being picked up at 6:10 am by the bus and returned to our door sometime before 5 pm at the end of each day.  Him happy, it’s all that matters.  The other stuff can work itself out.

 

 

 

 

Summertime Blues
July 17, 2017

I’m baaacccckkkk…

For better or worse, it’s been nearly a year since I added new posts to I Love Your Brain. I think about it often and I miss writing but these months have been charged with all sorts of new stresses and joys.

The most notable event of the “lost months” is that Cole started high school. He’s actually now successfully and happily completed his freshman year at a public LAUSD high school. He did well, enjoyed school, made friends (even had a girlfriend) and is now contentedly enjoying four weeks of summer school.

Filling nearly ten weeks of summer with two working parents is challenging, so we take activity where we can! Thankfully, he still loves school so summer school is a good, free option for part of summer.

The relief I feel about Cole liking his new high school and adapting to the new environment, teachers, schedule and transportation can’t be measured. The stress leading up to finding what we hoped would be the right school was immense for all of us. We’d been spoiled by CHIME. Cole had only known inclusion. How would this work at the high school level, in a school district that doesn’t practice inclusion at the high school level?

Interestingly enough, his school was open to allowing him to take some classes under general ed and some, including his home room under special ed. At first he really liked having his day split between the two, and he did well in all of his classes. He had support for the general ed classes through his special ed teacher and made some friends outside of the special ed class.

But somewhere midway through the year, he started to prefer his special education classes to the general education classes. He made more friends in that class and felt more comfortable and confident there. For the first time in his fifteen years he’s starting to identify more with kids who have disabilities or are more similarly abled to him. One hand it seems like a natural trend. High school is where most teens start to regroup and find their peeps.

On the other hand, it’s been harder for my husband and I to accept. We both recognize that it’s Cole’s choice and that his happiness is most important but in that way that most special needs parents have to let go of their own notions of what their child’s experience is supposed to look like and adapt to what it does look like, we have had to let go of the idea that having an inclusive education at this level is what’s best for Cole. It’s hard.

Despite the successful school year he’s had, it’s also come with a fair amount of loneliness. He’s made a lot of friends at school, kids he spends every school day with and some riding the bus to and from and school with (so spending roughly from 6:15am until 5pm together), but he doesn’t see these kids outside of school, except one movie date night earlier this summer.

Nor does he see much of his old friends. There are some kids who he was really close to at CHIME who he hasn’t seen since leaving CHIME. I understand it’s the ways things naturally go at this stage in their young lives, but I’m not sure how much he does. The reality is that there’s little intervention that I as a parent can offer. It breaks my heart.

Right now, I’m just hoping the rest of summer will pass quickly and that we can get back to routine of sophomore year, full school days. We’re in the process of building a swimming pool so next summer Cole will be able to enjoy his favorite activity any time he wants…swimming – in his own swimming pool in his own backyard! Hopefully it will provide some social opportunities for him too!

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HAPPY
September 15, 2016

We’re now almost a month in and dare I say, high school is going well. There were big bumps leading up to the first day, and a small one on the actual first day – the aide who was supposed to ride the bus with him didn’t show up in the morning so he rode alone with the driver until they picked up the next kid. Apparently, not legal so we made the wrong decision in allowing him to go, but the aide did eventually catch up to him on the route and he arrived safely for his first day.

His schedule got sorted out and he even has a close friend from CHIME in one of his general education classes. I think it’s helpful because having a typical, cute, volleyball team, girl chatting with you and laughing with you goes along way to inspiring other kids, kids who have not previously attended school with someone like you, to talk to you too. He’s making friends, slowly, but it’s happening.

School friends…not necessarily the friends you do stuff with on the weekends. That seems harder to navigate in high school, where parents are interacting in the same way and the community itself if much larger. At this age, kids generally start to take charge of their social lives so for a kid like Cole that becomes a bit more challenging without parental support and intervention. We’ll see.

Overall, the school has shown a great interest in making sure he’s supported, challenged and engaged. He really likes his main teacher, his special education teacher, who he has for several classes, and the general education teachers likewise are making efforts to ensure that he’s participating and part of their classroom community. It’s really quite impressive.

All that said, and I’m really not complaining, but it’s still not exactly what was promised. The LAUSD high school system is very different in terms of how it approaches kids like mine. Inclusion is not a concept that is implemented at the high school level. They mainstream, which is more a sink or swim concept, and where I’m thankful he’s at a school where the administration has more than a passing interest in inclusion more so than mainstreaming.

At the end of the day, this month has gone well. He comes home tired, but happy. He’s adjusting to the crazy schedule – being picked up at 6:10 am by the bus and returned to our door sometime before 5 pm at the end of each day. Him happy, it’s all that matters. The other stuff can work itself out.

LIAR
August 11, 2016

Reality bites…

We attended the freshman orientation with Cole this morning at his new high school. He starts school next Tuesday at a new school where inclusion means something entirely different than what we’ve experienced for the past fourteen years.

The school, and LAUSD, our school district, both seemed opened to having Cole attend this school, and touted the potential for him to do some of his classes in general education and some under the wing of special education. We worked it out as such in his IEP, painstakingly ensuring that he’d have plenty of opportunity to spend time with typical peers, as well as benefitting from the support needed for some subjects in special day class.

His schedule was hand delivered by one of his special ed teachers. First period – Jazz Ensemble. Um…What? That is supposed to be his elective, one of the courses he’d take in general setting. First off, he doesn’t play any instruments, nor is he physically capable of doing so. Secondly, Jazz Ensemble?

Apparently all of the other electives were full. That’s the explanation we received.

And it got worse from there. Jazz Ensemble is the only class he has in general education. Everything else in his day is in the special ed classroom. Again, what? This is not what was agreed upon and spelled out in his IEP. To this we received a “We’re not like CHIME. We can’t support him in class”.

Apparently the IEP means nothing.

He’s supposed to have a one to one support throughout the entire day. Someone who can tend to his personal needs, support his access to the curriculum and to the classroom, facilitate his social goals, and enable him to thrive in the school setting. Thus far, they haven’t hired, or found, this support person. We’re told they’ll be there Tuesday morning, ready to go.

Apparently without any training or understanding of Cole at all.

I knew high school was going to be different and that leaving CHIME would mean some changes in terms of the kind of support Cole would receive, but there seems to be little interest in ensuring that he receives the same kind of high school education and experience that his typical peers will have access to.

When they say no child left behind, they lie.

 

TAKE A CHANCE ON ME
February 23, 2016

The high school process continues. The great news is that Cole got into our top choice for him. The bad news is that the hard work is still ahead of us. The school he got into is an independent charter high school. It’s small, fully inclusive, and open to the challenge of having a diverse student body. It’s a performing arts charter but Cole was accepted to their liberal arts program.

They’ve never had a kid like him, but the reality is very few schools have. Cole’s unique beyond just his obvious challenges. I’m not sure where kids like Cole go to school but this process has shown me that very few schools are open to the unknown. Spectrum diagnoses are now apparently commonplace enough that they do not rattle most mainstream schools, and there are endless private options available to these kids.

The task of managing a child with physical needs is apparently more daunting to school administrations, than say some of the significant behavioral issues that can accompany many spectrum diagnoses. Add in the non-verbal component and he becomes even more so. The reality of a kid like Cole, who is by all accounts friendly, interested, cooperative, and bright in class, is that once people know how to manage his physical needs and to work with his technological accouterments (i.e. his Tobii), he’s a pretty easy kid.

Yes, he needs modifications for some of his schoolwork, and even the occasional accommodation, usually extra time, but even that isn’t terribly taxing. The big problem as I see it is that there just aren’t enough kids like Cole in general, and more pointedly, who want to be fully included. There aren’t even enough to motivate an innovative school or non-profit to start a specialized school for kids like him, as we’ve seen happen in the last decade or so for kids on the spectrum.

Neil Young started a very tiny school, which I believe emerged initially from a camp program that focuses on assistive technology for kids with cerebral palsy. It’s for younger kids, and handful at that, who can afford the private tuition. I’d love to send Cole to the camp to better his Tobii skills, and to perhaps help motivate him use it in social settings, and not just at school.

For Cole, whose only education experience has been in fully inclusive settings, and his only social group is a diverse pool of kids, mostly typical, the best, least restrictive setting for him is a high school that can provide the same. He’s motivated by peers and teachers who are seeing him, Cole, not the wheelchair, not the Tobii, just Cole, the boy.

Getting a school to take the chance of having him as part of their community is proving to be harder than anyone led us to think it would be. If the school of our choice can be convinced to take the leap and to go for it, the rewards of having a kid like him in their student body would be far greater than the accommodations and modifications that would be required to do so.

He brings something unique to the party and it happens everywhere he goes. I know I’m his mom, but I’ve seen it happen everywhere he goes. He has the ability to attract people, to make peers feel comfortable, cared for and important, and to make a lasting imprint on teachers and staff. He has countless checkout people at our regular haunts, and waitress staff at favorite restaurants that count on smiles from him and return them just as openly.

If he can continue his education at this school, he’ll find his place quickly, routines will become established, and life will go on, just slightly altered, and most certainly improved, by him being there.

Please!!!!  Take a chance on Cole!

SAY IT ISN’T SO
November 19, 2015

I toured a local high school this morning and then spent the hour drive to work trying my best not to cry.

We’ve spent most of Cole’s life fighting in one way or another for something or other. Very little comes easy in the lives of children with special needs, especially when you want your child to experience as typical a childhood as possible. We’ve never wanted Cole’s disabilities to prevent him from experiencing anything that interests him. He may have unique ways to approaching things, but we’ve been fairly successful in providing him with a fairly happy, rich, normal (ish) life.

It feels like it all comes to an end with high school. The tours tend to highlight all of the amazing academic and elective programs that each school offers and the opportunities for preparing for college and glowing futures. Fabulous programs are available to good to great students, but only those who do not have disabilities and may require support to access the curriculum. Students like Cole are relegated to special day classes where their opportunities are vastly limited.

Never mind that he’s managed to get through nine years of school with the same kids who will be advancing into high school programs where they have a world of exciting classes to choose from and clubs, electives and sports. If he were to attend the school that I toured today, he’d be left with access only to special day classes that are on the first level because the school is not wheelchair accessible (no functioning elevators in 2015!).

Physical space seems to a prevalent problem with most high schools. The desk spacing is so tight that there is barely room for a student to slide down a row to their seat, and definitely no chance for a wheelchair to fit beyond the doorway. How is that legal? There’s an obvious disinterest in any form of inclusion at most high schools.

My kid may not have the ability to complete high school in four years, however, that doesn’t mean that he doesn’t have the ability to eventually complete it, and move on to college. I can’t say for certain what his future holds, but I can say that without the opportunity to have access to a decent education it won’t be as bright as it could be, as it should be.

But it doesn’t seem like anyone is even trying. So now, tears…I held back as long as I could.

FRUSTRATION
November 17, 2015

The high school search continues. (Screaming loudly in my head)

I have a tour this week, one right after Thanksgiving, and another two just before the winter holiday break.

In a crazy attempt to find a good school, I thought today, at the suggestion of a colleague, to try in my work district. We live in LAUSD (Los Angeles Unified School District) and I work in Beverly Hills, which has its own, fairly well funded, highly coveted school district, BHSD. I called to see if I could permit in since I work in the area and could be his primary transportation. A no go. They stopped accepting permits from outsiders, other than from actual City employees.

It was worth a shot.

The truth is, it probably wouldn’t have been better for Cole academically speaking anyway, but it would be in a safe neighborhood on a clean, accessible campus. Sadly we’re kind of down to those being highlights.

I’m touring our home school in a couple of week, if only to rule it out. After speaking to their special education counselor, I learned that the campus is accessible (“Yes, it has stairs”) and that it’s safe (“We have several police officers patrolling the campus, but we can’t control what goes on outside the gates”) so I’m feeling really confident about it. (Typed dripping with sarcasm, in case it didn’t translate in the writing). I’m having a really hard time mustering any enthusiasm for that tour!

I continue to be perplexed by how hard it is to find a decent placement for children with special needs, who want to attend typical school programs, but need some support either for their physical needs, or accessibility to the school work. Cole has only known inclusion. He’s been included since he was a year old. 80% of his friends are typical kids. He doesn’t understand that the world outside our little bubble isn’t as welcoming or accepting of people who are different. It’s starting to feel like a cruel joke. It feels a little like being thrown to the wolves.

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I don’t know what trumps a wolf, but I’m preparing for battle, and victory.

 

REINVENTION
November 4, 2015

I seem to reinvent my career every so often. It’s not so much a conscious decision to do so but circumstances in my life seem to find me in different roles periodically.

I started my working life as hairdresser, which quickly evolved into my teaching beauty school because my family owned a small chain of cosmetology schools. Besides teaching, I learned a lot about running the schools and managing as well. I even helped to develop and launch an inter-school hair show, complete with product vendors, demonstrations from industry leaders, and a student styling contest aptly named Style ’88. When my family sold the schools, I too left the business. I started cutting hair when I was in high school and by the time I was in my late twenties, I became burnt out.

Unsure of what I wanted to do next, I accepted a job opportunity from a family friend who’s law firm was overseeing an entertainment company and sort of fell into my next chapter. I started as the receptionist at a small international film distribution company and quickly moved to another company, assisting the president of sales. I was then given the opportunity to handle sales in some of the smaller international territories, and my career in international film distribution took off. An actual career was born. I traveled to places like Cannes, London, Milan, and Budapest on an annual basis for film markets and festivals and enjoyed studying the film culture in the various countries where I handled sales. It was an interesting career for quite a long time.

When Cole was born I was running the international division of a distribution and production company. I had not intended to become a stay at home mom but the circumstances of his birth, and the reality of his life, kept me home. We spent the early years doing every and any early intervention available. Besides the barrage of therapies, we went to an inclusive co-op infant toddler program, moving then to the inclusive pre-school. We did acupuncture, massage, and aquatic therapy. We started hippo therapy (equestrian, not hippopotamus). I spent seven years home with him, learning to be his mom, his advocate, his therapist, his caregiver.

Eventually, however, he didn’t need me in the same way. He embraced every ounce of independence he could find. He started staying in the aftercare program at school, taking enrichment classes, playing with friends, and doing homework. He wanted to stay at school until they threw him out. So I started consulting here and there at first and eventually found myself in a full time job in the same international distribution arena but now doing contracts and financing instead of sales. I was able to have some flexibility in my schedule and no travel. Perfect for my family life.

Many years and two merges later I’m still fortunate to be working doing contacts, financing and more. I like to joke that I’m a lawyer by day (sans the law degree of course). Most people who do what I do are in fact lawyers but there are a handful of us in this business that are laymen with a decent grasp of the legalese. It’s challenging and familiar at the same time. I work with a group of people I really enjoy, and I have some flexibility. I’m in a good place. But that restless feeling that I wrote about a couple of days ago is seeping into all aspects of my brain. What’s next for me?

The whole high school search trauma (also from previous post) has me seriously contemplating climbing up on a soap box to challenge local, state, and federal education boards and governments to do better for kids with disabilities.  We’re doing them great disservice.

I’m inspired by Malala’s stance. Cole and I are reading her biography and it’s hard not to draw some similarities in her fight for education for girls and the need for people to advocate for children with disabilities to have been educational opportunities. Her battle had dangers and implications with higher consequences but the idea that everyone, every child, deserves the right tot quality education holds true no matter who, where or what the child.

If only activism could draw a salary…

I HATE MY SCHOOL
November 3, 2015

We’re in the process of looking at high school options for Cole. Sadly we soon will leave the inclusive nest of CHIME and throw him to the wolves known as LAUSD public high school.

It’s terrifying. The main realization I’ve come to is that children who are differently abled or different learners are not exactly welcome when it comes to high schools. The effort or cost to actually provide any sort of education to this population is not deemed worthwhile.

There are little opportunities to create a class schedule that would allow children who need support, physical or otherwise, in the classroom to learn in a typical high school classroom. In an overly crowded classroom with 45 desks, there’s not even physical room for a child in a wheelchair to maneuver or settle.

Our home school is not a viable option for Cole. Four different local gangs (so I probably don’t need to further explain why he’s never going to go there) rule the campus, so safety becomes a huge concern, and it’s not geared for kids with physical needs. I’ve toured a couple of schools so far and have several more to visit over the next month before we have to start making decisions and applying.

The one thing I’ve come to understand is that there will be very little opportunities for Cole to be included in, what I’ve come to fondly call “gen pop”. He’ll be relegated to special day classes where the classes are slightly smaller, the curriculum is modified to differently abled learners and where he can have someone with him to support both his physical needs and to help him access his classwork.

Part of me understands why high school has to be like this. They’re under-funded; overcrowded, and under-trained when it comes to inclusion. I also have no illusions about my son’s ability to keep up at class level without considerable support and modifications to his work. I do get the simple argument but to me it’s more complicated, and it’s more of a civil rights issue.

No child left behind means that no child should go without an adequate education. It doesn’t seem like our public high schools are even taking the first step towards providing a decent education for children with special needs. There’s a population of over twenty percent of our children who are left without real opportunity to have a true high school education and experience. It’s heartbreaking and it’s wrong.

Besides the placement of being in special day classes, there is little opportunity for any social interaction with gen pop. One school offered the possibility of him taking an elective each semester that would allow him to be in a gen pop classroom. Cole’s a very social being. He thrives on the interaction and friendship from typical children. He’s always made friends with typical kids and has never been a setting where he’s only among children with special needs. His criteria for friendship are all about shared interests and experiences. Even educationally, his typical peers motivate him. He wants to show them he can do things, what he’s learned, what he’s capable of. I fear that relegating him to special day classes will leave him lonely and unmotivated, and eventually depressed.

It sounds dire. It feels dire. I loathe this experience. I know that wherever he ends up, we will be right there in the trenches advocating for everything possible that can make his experience more inclusive and more tailored to his capabilities rather than disabilities. I know it will take a lot of work and diligence. I’m prepared to be the loudest squeaking wheel in the school if that’s what it takes to ensure he has a positive high school experience.

I just wish that there were more interest and support in educating all children from the schools. There are too many children who are being left behind.