THREE LITTLE BIRDS (Bob Marley)
November 11, 2019

Several months ago a dear friend asked me to be part of one of the segments of a podcast she created.  It would be me, and another close friend, and her talking about the effect of having children with special needs on our lives.  The three of us know each other well so despite my nervousness, I agreed to do it.

I arrived at the designated address and was directed to a studio where there were big microphones (the furry ones that get placed right up near your face) and some chairs.  There were lots of audio crew people and producers and Amy, the host, our friend Dawn, and me.  We sat and started chatting under Amy’s topic direction.  The three of us each have a child with special needs.  Amy’s daughter is Cole’s age and we’ve been close for twelve or thirteen years now.  Cole and her daughter continue to be pals despite being at different high schools these past several years.  Dawn is someone Amy and I met a few years ago at a support group.  Her daughter is younger than our kiddos but she became a fast friend.  So the set up felt comfortable and the conversation somewhat familiar though we delved deeper than we might over cocktails at a mom’s night out.

After a point, the other people and equipment sort of melted away and the conversation flowed easily.  We recorded for an hour or more, shed a few tears, laughed a little and left our vulnerability on the floor.  I left feeling pleased about doing something new, getting out of my comfort zone and not allowing my nerves to completely defeat me.  Happy to have spent a little time sharing with two people I love and trust, and curious to know how it would all sound if and when it aired (is that what podcasts do? Air? Stream?).

Tomorrow, months since we recorded, our episode enters the world.  It’s available on whatever platform you listen to podcasts on like Apple.  The first five episodes of the podcast have all been released in the previous weeks and this is the final of this round.  I hope there will be more seasons or whatever podcast runs are called because it’s a really interesting, thoughtful and thought provoking premise.

It’s called The Challengers with Amy Brenneman.  It’s not a “I had a challenge and came through and everything is rosey” kind of look at challenges in life.  It’s more about how life challenges have us (collectively) stepping more into humanity because of or inspite of the challenges.  The guests she chose for the these first six are all fascinating and diverse.  I highly recommend listening to all of them.

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Here’s a link to the podcast.   I hope you listen…

The Challengers

FEELIN’ GOOD (Nina Simone)
September 13, 2018

I’ve gone through another period of inconsistent writing and I find I miss the outlet terribly.  Life gets in the way of my creativity!  It inspires it as well but when writing is more the hobby and work and family responsibilities fill much of each day, hobbies take the back burner.  Nevertheless, I’ve challenged myself to make a bigger effort to sneak in a bit of writing each day.  The truth is, it benefits my mind and soul, so it’s a valued effort.

I turned 54 on the 4th…While I love birthdays, particularly other people’s birthdays, I don’t generally feel the creeping up of the years to be bothersome.  This year though it did make me feel introspective. Though I do have some self-awareness and keen sense of the things I need to do maintain my health, sanity, and joy, I do have a tendency to shirk some of the responsibilities that are required to maintain myself.  This year I made a decision that I will shirk less and go through my 55thyear taking better care to make time to exercise, write, enjoy my family and friends and to step out of my comfort zone as much as possible.

I’ve actually been attempting to try new things and put myself out there throughout the past few months.  Nothing radical, small steps to expose myself to new experiences, places, and people. It’s been a wholly positive endeavor. I took a girl’s night out grilling class and wound up sharing a table with two women, both of whom are speech pathologists and one of whom had coincidentally worked at my son’s school for a brief time.  What are the odds?

I also took a chance and applied to a writing program that Imagine Entertainment just launched. Beyond the lengthy application, that included a video component, I had to provide a project I would like to develop (I have a TV series idea that I’m working on) and other writing samples.  I was not among the handful selected (over 4,000 writers applied), but I feel proud that I put myself out there and gave it a shot.  I plan to try again for their next session in February.  It will give me some time to get my ideas in to a better format and who knows???  Another coincidence, my company moved into the same building as Imagine a couple of weeks ago!

I look forward to having a successful self-motiving, self-aware, self-caring, self-sharing year.  I want to be present and well for myself, my family, my friends and for any new challenge or experience that comes my way.

Cheers!

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JUST LIKE STARTING OVER
September 19, 2017

I’m one month out, post surgery. I got the clearance to begin easing back into physical activity. I can walk with vigor, exercise moderately, and tend to some of Cole’s needs (still not quite ready for heavy lifting, but can move towards it over the next few weeks). I’ve been back in the office since the start of the third week. I tired quickly at first but I feel like myself again.

Yesterday all of the surgical tape was removed, and I got my first clear view of my new self. While the procedure was prompted by health concerns and constant pain, I must say the superficial benefits of it are pretty amazing. I actually have breasts that fit my frame and compliment my body. I feel lighter, stand taller, and am completely inspired to get the rest of me in better shape to better suit my new boobs. All of my clothes fit differently too.

As I wrote previously, the aching pain I have suffered from for twenty odd years is gone. Though I haven’t been able to lift Cole yet, I can tell that not having so much body in front of me, will be an asset in lifting him safely and more comfortably, especially as I move deeper into my fifties and beyond. The need to lift him and support his body whilst taking care of personal needs and dressing is not going to end.

It will be several months before I’m completely healed, and at least one or two more before my new breasts settle into their final size, but even just four weeks in, I have to say it was worth all of the hardship I’ve inflicted on my poor husband and child, who have had to make adjustments to their routines to accommodate my needs. At the end of the day, it’s just a few months in the lifetime we will continue to share. From here on out, each day will give me a chance to get stronger, healthier and to become more the self I dream of.

Doing something this major, largely for myself, has taught me that it’s okay to take chances on myself. I view it as an opportunity to reset some of the habits I’ve fallen into over the years of my adult life. I am eager to continue transforming myself both physically, through better eating and regular exercise, mentally, by engaging in things that interest me and feed my soul, and emotionally, by trying to be a better wife, mom, friend, daughter, sister – a better me. My guys and my friends have shown tremendous kindness, support and love during this process and I want to keep that alive in all of my relationships.

Who knew that new boobs could lead to such a whole being revolution?

CHANGES
September 18, 2017

It’s not often that parents of special needs kids do anything to radically rock the boat, but I recently did something radical that impacted everyone in my family. I got a breast reduction. I have contemplated doing so for the better part of fifteen years but held back for any number of reasons – cost, time off work, the physical restrictions, my weight, and the fact that electing to have surgery made me nervous.

I researched and researched and finally decided to just go in for a consultation so I could learn my options, my potential outcomes and whether it could be covered by insurance. My surgeon took one look at my bare, braless breasts and exclaimed, “They’re huge!” Followed by “Please let me help you”. I was simultaneously amused and taken a back. She’s a breast surgeon; surely she’s seen large boobs. Apparently mine were in a class of their own. Who knew?

I learned that there was little doubt that my insurance would approve the reduction and that the surgery itself is considered a fairly simple surgery. There’s no muscle or organ cutting and it generally is a 3-4 hour procedure. I learned about the post-op care, very limited movement for the first couple of weeks, and no lifting or sweat worthy exertion for several more. This again gave me pause because I have a 15 years old child who I lift and transfer and dress and change. How would that work with just one of us being able to do that for nearly two months?

My husband was supportive and cleared his travel schedule (he travels a lot for work). He assured me we could get through this and that it if this surgery was necessary and wanted, we’d figure it out. We do have a history of getting through all kinds of challenges, obstacles and uncertainties. Part of it comes with the territory of special needs parenting (you have to be very malleable) and part of it comes from us being a pretty good team.

So I moved forward and got it on the books. It was initially scheduled for August 14th, the day before Cole started his sophomore year of high school, but it got moved to the next, his first day of school just weeks before. We enlisted childcare to be home when his school bus arrived in case we weren’t yet home (the surgery was supposed to be 3-4 hours, starting at 10am so chances were good we’d be home on time), but just to be safe…childcare in place.

I cleared it with work, with the plan to work from home after the first week and then take it from there. I’ve been at the same company for many years and had their full support. It goes without saying that telling your male bosses that you’re having breast reduction surgery is quite a funny experience! Lots of gulping on both sides and averted eyes!

I got cleared by internist and again by the surgeon, and off we went.

My surgery lasted hours longer than a typical reduction, over six hours. I felt groggy leaving the surgical center, but immediately noticed the effect of the reduction. My neck, shoulder and back pain lifted. I had drains and tubing sticking out of my sides, obstructing most of my arm movement and I felt sore. I was warned that they do a lot of lifting of your torso and twisting during the surgery to ensure that everything is even, and in place properly and symmetrically. The after effects of that did not go unnoticed.

It will be months before my new breasts are completely healed and able to lead a normal life but almost instantaneously the effects of the surgery are life changing.

More to come…

LEAN ON ME
September 15, 2017

The value of a quality caregiver is unrivaled, and it can come in different forms, each fulfilling a specific need or time in our children’s lives.

Summer care is always difficult for us as a special needs family. My husband and I both work full time, and up until this year, we’ve been fortunate to have summer school and day camp at my son’s school, that cover all but a couple of weeks of the summer time off. We usually do a family week vacation or staycation depending upon what’s going on with us financially and schedule wise, and find full day child care and support for the other time off. There’s cost involved, but we’ve been fortunate thus far to have had the school programs to rely upon.

Cole finished up his freshman year in high school, and had over two months off school. Because he has an IEP, he qualifies for Extended School Year (ESY), which is sort of summer school. It’s not quite four weeks of casual education at one of five LAUSD campuses, running from 8:00 am to 12:15 pm. It’s something, but it left us needing childcare for his entire summer holiday, because he still needed someone to be at the house when he arrived home from ESY and for the six hours left in the workday.

Finding childcare is a challenge in itself. We again have been fortunate thus far to have maintained contact with a few of the great support staffers at our former school, and were able to offer competitive salary during the summer and the comfort for us is that we have people we know, like and most importantly, trust with Cole. They know him, he has trust with them and they know how to care for him and to engage with him.

The value of that trust is priceless.

The first weeks of summer were easy and comfortable for Cole. We employed a woman who worked with him at his former school and who he enjoys spending time with, mostly chilling out. He has his moments when he likes nothing better than chatting, watching cooking shows and relaxing. It worked well for the post ESY afternoons, when he felt a little taxed from ESY and was happy to relax.

We then took a few days off for family time in Carlsbad, a little beach town in San Diego County that we all enjoy. Mornings were spent doing some visits to museums and the aquarium, and afternoons in the pool. Cole’s idea of perfect vacation!

At the end of this summer I engaged a former staffer from his school, who we’ve maintained a friendship with for the years since he left the school and went on to pursue his higher education in Northern California, as well as fitness and wellness interests. I thought that it might nice for Cole to have a male caregiver, and I wanted him to get out and do some stuff. The first week they watched a little cooking on the telly and then went out and shopped for ingredients and prepared some of the recipes they watched! They met friends for lunch and went to a local art studio and did some painting and they headed over to our neighbors house for a swim one afternoon.

The second week they attended a day camp I found for Cole. Their summer program was for kids aged 14 and up. Cole was amongst the youngest but really loved being among teens. Each day they did all sorts of fun activities, ranging from gardening, to cooking, to working out, to creating art. They even filmed a movie in iMovie, and did some literacy studies and practice. Their final day was a beach outing. They both made a lot of friends and pretty much had a great time. As a parent, I couldn’t have asked for more.

The bond between these two is pretty special, and having a male caregiver is something that Cole needs. He was respected, treated as a nearly sixteen year old, and engaged in age appropriate, fun, activities. The balance between being a friend, mentor, and caregiver was just that perfectly balanced. He thrived. He soared.

We now need to find someone who can be all of those things to Cole who lives nearby so that he can enjoy some independence away from his parents, and perhaps even with friends, but with someone trusted, creative, and kind, who can also balance friendship, mentorship and caregiving.

Any recommendations???

 

 

 

SHARP DRESSED MAN
July 24, 2017

My boy is growing up.

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Sometimes it’s hard to see the subtle changes in his personality, demeanor, and interests as he ages. There are delays to be sure, and some changes are diminished because he simply doesn’t have the communication skills necessary to adequately express everything that he’s feeling internally. I like to think, hope, that we’ve all (me, Dan and Cole) got some of the communication down to where the important things, especially, are eventually made known.

This past weekend, after running a few necessary errands, Cole vehemently did not want to go home. Having groceries in the hot car, we agreed to stop at home so Dan could run things inside, while I talked to Cole about where he wanted to go. He actually really seemed to need to go somewhere. Turns out he really wanted to go to the mall to do a little clothes shopping for himself.

I’m a big fan of on-line shopping, especially for his clothes. He hasn’t shown much interest in what he wears until recently so it works out pretty well. I made a promise along time ago not to dress him stupidly and I’ve managed to keep it thus far. I frequently ask for his opinion of things and recently he showed interest in selecting a new swim suit ( a cute crew cuts pair of navy trunks with little orange embroidered stars) and rash guard for an upcoming beach get-away.

Needless to say, the mall excursion came as a bit of surprise. He happily searched through Gap Kids looking for, what exactly, I don’t know. We left with a cheery striped polo shirt and a pair of madras plaid Bermuda shorts. Both confidently selected by the boy. He tightly held on to the bag as we continued through the mall (and even into the car). We didn’t find anything else he was keen on, and he made it pretty clear that this trip was not intended for parent browsing or shopping (though his dad did manage to snag a little something on sale at Lucky, despite protests from the boy).

He proudly wore his shirt to summer school today, and has already requested that it be cleaned and ready to pack for our trip. I’ve promised to involve him in any future shopping for his needs. It adds another layer to the process but it will be interesting and fun to see where his taste takes him. Just another reminder of how important it is for him to have every opportunity to express himself, with wardrobe, words, and whatever other ways he finds.

GIRL AFRAID
January 5, 2016

The New Year always brings thoughts of improvement, change, and resolve. It always seems like the time to devote oneself to overhauling ourselves, our finances, our jobs, our lives, and despite my reeling against making resolutions, I do find myself in that same contemplative mindset.

The big ah ha for me is that I am my own worst enemy. I seem to get in the way of my own success or interest far more often than I don’t. A big part of my problem is that I have become a creature of comfort. Where I once barreled into things head on, I now research, create excuses, and find myself sitting resolutely where I am comfortable.

Comfort however should not be construed as content or satisfied. It’s simply a place where I know what is expected, or how to do maneuver, or how to behave. Some of this comes naturally with age and some of it comes from trying to maintain some sort of control in a life where I often have very little and some of it comes from fear.

Fear can be debilitating. I don’t think I’m that extreme but I do have a level of fear of the unknown that frequently keeps me from reaching a perceived goal or intention, or from trying new things.

I really started thinking quite a lot about this as we began contemplating our annual family trip to Mammoth so Cole and Dan can ski. We’ve been doing this for several years now with three or four other families in tow.   I learned to ski when I was nine and skied often until I was in my early 20’s. I was actually pretty good and really loved the sport.

I haven’t skied on any of the recent trips. The first year my excuse was that I needed to be available for Cole, who skis with an amazing adaptive program, Eastern Sierra Disabled Sports, in case he wanted to stop or needed anything. The next year, I got it in my head that I would fall and hurt myself and it was all over.

This year, I’m skiing. So what if I fall. I’ve fallen lots of times in the past and I know how to fall and to get up. I’m not that fragile and I want to have fun skiing with my husband and friends.

I do the same sort of thing to myself concerning my weight. I know how to be the fat girl. I know how to be the curvy one. I know how to handle myself with extra padding. When I start to lose weight and am working towards becoming fitter, stronger, and yes, thinner, I sabotage myself. The minute it becomes noticeable, I feel less confident with the attention and begin the slow decline of success. I’m not good at envisioning myself at my goal where I will likely be less comfortable, even if I’m healthier and smaller.

This past year or more I’ve actually managed to keep weight off despite my best efforts to thwart myself.   I’m intending to rejuvenate the efforts to improve my health and to lose weight, to lose baggage. The reality is that there is more to fear in staying where I am, as I am, in terms of longevity. It’s time to learn how to deal with my own discomfort and my own pathos so that I can become a support to myself, not a hindrance.

I’ll save some of the other fears for another time. I know I’m not alone in this pathos and I know it’s a challenge to get out of my own way, but I face challenges all of the time as Cole’s mom and I don’t view them the same way I view my own. I would move heaven and earth to make every day of his life better, easier, more fulfilled. I just need to try to give myself the same care and attention. The better off I am, the better able I am to rise to his needs.

Here’s to a New Year! One filled with first steps, second steps, and new steps.

BABY ELEPHANT STEPS
November 5, 2015

Cole’s doing an intensive two-month long, three days a week, bout of physical therapy. He’s getting up on his feet, standing and stepping using a Lite Gait treadmill system. So far he loves it. It’s hard work and already this week he’s doubled his walking distance. After four months of largely reclining on a bed or sitting in a comfy Chill Out Chair, it’s got to feel good to get his body moving again.

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This is a boy who for years would repeatedly respond to almost any question with “I want to move my body” on whatever communication device he happened to be using at the time. He has always preferred to be on his feet, whether supported by equipment or human.

Until the surgery, he even liked to move when he was sitting, the “kicky dance” as we fondly call it. When he hears music he likes, or sees something funny or entertaining, he would kick his legs and feet whilst drawing his hands to his hips – think River Dance but seated. He started doing this when he was baby and continued up until the surgery. We are just now starting to see the tiniest bit of foot action, giving us hope that the kicky dance will return. It’s adorable, and the smile that most often accompanies it is beyond infectious.

I feel relief in the joy he seems to be taking from doing the physical therapy. While his endurance still needs some building (he’s exhausted at the end of the day, which makes evenings a bit trying for all), he’s finally starting to show signs of psychological recovery from the surgery. His body and mind did not heal at the same rate but it seems like the mind is starting to catch up finally.

The holiday season is a time of year Cole loves, giving me lots of hope that between all of the strength and walking training, and his love for all things holiday will have him completely back to his happy, strong, amazing self in the New Year! I’m also holding on to hope that we can stave off the constant listening to holiday music until after Thanksgiving…only 21 days…could happen…

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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ME, MYSELF & I
April 16, 2015

Recently my frustrated husband had a conversation with Cole where he told Cole that he was behaving like a selfish child and that he was only thinking of himself. It got me thinking and I realized that in many ways it’s true, he is selfish. It also made me wonder if this is something that is common amongst kids with special needs. By nature of their condition(s) they require additional attention and care, sometimes at the expense of someone else’s needs. It’s just a reality of their lives.

I don’t think that Cole is inherently selfish or narcissistic but I think it’s hard to not exhibit these tendencies when you’ve had people (your parents) basically catering to your every need for your entire existence and bolstering your self-esteem at every opportunity. Because he isn’t physically able to provide some of the niceties or support or even comfort, he’s not really developed a strong means of expressing empathy, sympathy or emotions using other tools. The toll of some of his brain injury also makes it hard for him to completely have a handle on his own emotions or his interpretation of other people’s feelings.

At the heart, Cole is a loving, kind kid but some of his behaviors feel manipulative and selfish. He doesn’t often recognize the impact his behavior, especially bad behavior, has on the other people around him. He’s not prone to big tantrums or anything that dramatic especially in public, but he does express anger and frustration with some choice actions like teeth gnashing, biting, and striking out with his arms or legs, often directed at his dad and me. It’s not pretty and it’s not something we condone but it’s also not something we’ve yet figured out how to maneuver. Punishment doesn’t serve us well because he doesn’t care to associate the punishment with his action.

Sometimes his lack of recognizing that there are other people who likewise matter simply translates into outright rudeness. We might be on the phone with his grandparents and when he tires of the conversation or feels ignored, he reacts with frustration by grinding his teeth and vocalizing by shouting or whining. He’s unwilling to accept that not every conversation will be about him or will interest him.

I can’t help but wonder if this something we haplessly fostered. All children become the center of their parents universe, but when you have a child who needs you for everything, the tendency is to pour everything into them and unlike typical children, who gradually become more and more independent, your child continues to need your dedicated attention, which can also be a source of frustration in their own desire for independence. You want to make their lives as rich and full as possible, and you want them to feel loved, cared for, and empowered. But where is the balance?