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.

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BALL OF CONFUSION
November 18, 2015

This morning Cole had a strange reaction to our discussing two upcoming parties we’ve been invited that somewhat conflict, more like overlap, and as he grew more and more upset, I was both struck by how ridiculous his reaction was and by how poorly my every attempt to calm him down. There’s nothing worse than starting the day off with tears and confusion.

It’s one of those times when I’m reminded of how hard it must be for him not to be able to express himself adequately, and how hard it is for my husband and I to always guess correctly. There’s so much assuming when dealing with Cole and his communication. In the instance this morning, I think he must have misheard, or jumped to a conclusion in what he heard, which upset him, and from that point he was fully committed to his reaction.

Honestly, I cannot imagine not having the ability to talk. I talk to myself. I talk to Cole incessantly – a habit I developed when he was young. I talk. As a kid, my parents joked that if we went on a long road trip, they could literally just sit back and I’d talk continuously throughout the whole journey, however long it may have been, often without noticing that no one else was joining in. My brother would immediately fall asleep, and I rambled.

It pains me to know that more often than I’d like to think, we’re missing the real point of what Cole is feeling, wanting, or trying to communicate. It also saddens me that he cannot always communicate a question to clarify something, or that we cannot adequately suppose that there is a misunderstanding or confusion. Even with the support of his communication device, it can be difficult for him to clarify his understanding or needs.

And of course, I constantly wonder what’s going on that beautiful brain of his. His inability to verbalize or vocalize his thoughts has no bearing on the thoughts running through his head. If I could have a super power, it would be to read minds, more specifically, to read his mind.

 

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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.

 

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THAT OLD FEELING
November 16, 2015

No matter what your circumstances, marriage is hard. Whenever you have two different people approaching anything together there’s bound to be some give and take, and when it’s creating a life together, and raising a child together, the potential for discontent becomes greater.

Throw in a child with special needs, who impacts your lives in many ways a typical child does not, the discontent grows. You can’t blame your child for the impact he has on your life. For the most part, his presence in your life is glorious, as with any child. But his needs will always take precedent and his influence is felt in nearly every decision.

Cole’s now fourteen, an age when many teens are starting to spend a couple of hours or more in the house alone whilst the parent(s) are out running errands, grabbing a bite of lunch with friends, working out, going to a movie, whatever. It’s an age where a lot of teens are also going out on their own, to the mall, parties, the movies, etc. Unfortunately, that’s not us, and it’s not Cole.

I’m certain Cole would love the opportunity to have the freedom to hang out with friends, doing something fun with out parents or adults. But he needs someone to support him, even if it’s just pushing his wheelchair, and making sure he’s included in the activity. The opportunity has never come up, not yet, but it’s also not something we can impose on his friends.

We don’t have great childcare at the moment and moving him is so much harder on him since the surgery, which leaves us with little opportunity for date nights and the like. Not having alone time puts a lot of stress on a marriage. You’d think not spending time together would prevent it but I find the disconnect makes things so much harder. It often feels like two people moving through a life side by side, but not together.

I’ve given it a lot of thought because my husband was traveling quite a bit these past months and given to my own devices, I create my own routines and it’s then hard for him to break back in to the fold. We bickered and bitched for the first weeks that he was home, and just this weekend things started to feel reconnected. We didn’t pick on one another, we accomplished things, and we relaxed a bit. I’m hopeful that we can continue on this path for the next few months where he’s homebound and not traveling. It’s nice to see glimpses of “us” again.

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RUN THE WORLD
November 10, 2015

I have two nieces who I love to pieces. Sorry, couldn’t resist. I always think of that cartoon where the cat hates meeces to pieces…I want to say the Pixie and Dixie Show? Jinx the Cat? Anyway, I adore my two nieces…to pieces.

Emily is seventeen and senior in high school. She’s currently sending out her college applications, narrowed down to something like fifteen from forty! She’s looking at schools all over the country with an interest in computer science. Em plays on the varsity volleyball team at her high school and in league as well. She also played water polo for a season in high school.

She’s been part of a junior leadership program at Cedars Sinai for several years as well as volunteered as a candy striper. She also has been involved with some girls empowerment seminars at her school and was selected to be a part of the Girls That Code internship program this past summer, doing a seven week , 9-5, stint at the Honest Company. She’s impressive.

Emily

Emily

Her sister, Devon, is fourteen, almost fifteen. She is a freshman in high school, and plays on the varsity volleyball team as well. She is in fact one of the top players on the team. She’s one of the top players in her age group in the country. She plays both indoor and beach volleyball and is getting a lot of notice. She too plays in league, and for the US National High Performance beach volleyball team, in the 17 and under category…one of ten girls. She’s impressive.  It’s going to be interesting to see where her interests take her through high school.

Devon

Devon

Besides their shared love of volleyball, the girls are actually quite unique. Emily is more serious than Devon, and Devon is more artistically inclined. They’re both bright, kind and beautiful. I love having nieces because it gives me a chance to get my girlie on, especially when they were younger.

Even though we live in the same area, I don’t get to see to them nearly as often as I’d like. The circumstances of my life are a big factor – between work and taking care of Cole, it’s tough to find time that works with their busy schedules. With Emily perhaps attending a university on the other side of the country, it has me wanting to see them more. It will be so different with her, and then Devon, away on their own, finding their own place away from the family. Cole and I are already plotting out our care packages! Monthly letters, photos and treats!

Tonight I finally have a chance to see them both play together on the same team in the playoffs for their high school volleyball league. The stars aligned – the game is near my office, starts at 7 pm (later than usual), and I’ll be there, cheering for my darling nieces. Whoo Hoo!!!

Cole&TheGirls

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LOVE AND HAPPINESS
November 9, 2015

I attended a party this past Friday that is hosted by a couple of companies that I do work with.  I didn’t really know that many people in attendance, which is partially why I actually dragged myself to the event in the first place.  More often than not, I can be shy and I have hard time motivating to be bubbly and open.  Not always, and funnily, those who know me might find that a bit surprising.

In any case, I went and I spent a couple of hours enjoying the Santa Monica Pier after dark with nothing but lawyers and bankers, meeting people I’ve been talking to on the phone or communicating with vie email for years.  It was pleasant and really nice to have faces to the names now.  I had lots of enjoyable conversations and feel like it was definitely the right decision to attend.

I had one conversation with someone I consider a friend.  I’ve known him for many many years, though I only see him once or twice a year.  We are Facebook friends so we keep abreast of the shared events in our lives through that, which is really one of the things I most enjoy about Facebook.

One thing he shared with me is that he truly enjoys following my Facebook posts because he believes that they bring joy to people.  I hadn’t really consider that and don’t know that I’d describe myself or my posts as such but I was really touched that it was what he takes away from my shares.  It got me thinking about the interpretation and intention.

i suppose in many ways I do try to find the joy in things, even in dark situations like Cole’s surgery and recovery.  Somewhere in the love and care there are such moments of glee and joy that perhaps that is my intention in the way I share things.  It’s the way I try to live my life as well.  It’s not perfect, and it’s never going to be perfect but that doesn’t mean that there’s not infinite possibilities for happiness and joy – for hope.

I also tend to feel like even though we struggle, and have tough times, and life’s not always easy for us, or for Cole, there are so many people in this world, in my community, who have it worse.  Much as I enjoy a good bitch fest and the occasionally wailing and moaning about something, I never take it that seriously because I do always believe that it will all work out in the end.  I have hope.  I have joy.  I have love.

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SWEET DREAMS
November 6, 2015

I feel somewhat validated! For years I’ve complained that the massively interrupted sleep I get is the root of a great many of my downfalls – moodiness, forgetfulness, weakened immune system. Cole routinely goes through bouts of insomnia, or spells when he randomly wakes up at the same odd hours in the night for a long enough period to fully wake me, and then goes back to sleep, while I lay there struggling to do the same.

Even today, we we’re up for hours when he decided 2:45am was a good time to wake! I grabbed an extra hour around 6am before I had to head out to work, but I’m greatly missing those few missed hours!

On top of dealing with Cole’s sleep issues, I hit the age or stage in life where I’m occasionally plagued with insomnia due to the hormonal changes. You ladies of a certain age range know what I’m talking about! It basically sucks to feel quite young at heart and mind, but to have your body remind you that it’s aging whether you like it or not!

Anyway, for various reasons, I don’t think I’ve had an extensive period of time where I experienced quality, uninterrupted sleep. And I’ve blamed it on any number of my behaviors. My husband has often just looked at me like I’m somewhat crazy but now Time Magazine has published a study showing that even just a single night of interrupted sleep can have negative effects on your body and mind.

Interrupted Sleep May Be As Harmful As No Sleep

Now, if only they could provide some natural and realistic interventions that would help all of us who have our precious sleep interrupted!

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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…

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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.

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SEE THE LIGHT
September 11, 2015

This week has been all about filling my mental toolbox.

I’ve come to realize that if I want to successfully help Cole with is anxiety I need to arm myself with some useful tools and strategies. My approach, generally to try to reassure him that everything is going to be all right and to spell out every step of each day so that he has a complete understanding of the days expectations isn’t working, even just a little bit. Last night I started reading a book about dealing with kid and teen anxiety and they eschewed my instinctive actions practically from the first page, so I have some reading to do this weekend to see if I myself can get a better understanding of anxiety and methods for supporting Cole.

I am also adding some creative tools to my box. I have quite a few DIY home projects I want to work on and while I’m not necessarily a builder, designer, or mason (some involve brickwork!), I do have some visionary qualities and want to build on that. Saturday night I’m attending an art party where I’ll paint and drink wine, both with the intention of sparking my creativity. I’m not a painter, but it sounds fun and I’ve come to realize that I don’t pursue fun enough. I need to play more!

I’ve also recognized that I have a tendency to procrastinate so I’ve been working on moving myself forward instead of being stagnant. The summer left me a bit shell shocked and I felt like I didn’t accomplish any of the little projects I had wanted to take care of whilst being tethered to the home front. Now they are all screaming at me to take care of them!  Each little task that gets handled makes me feel lighter, and brighter.

Even though things are still in flux and Cole’s still not back to his old self entirely, I realized that me standing still isn’t going to help anyone.

On a really positive note today, Cole happily stood up for about ten minutes at his physical therapy evaluation…Maybe he realized that moving forward even just upward, is better for him too!

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