Archive for the ‘Life’ Category

SIXTEEN FOREVER
September 20, 2017

My boy turns sixteen today. Sixteen! How in the world did sixteen years go by so quickly?

At sixteen, he’s leading a relatively happy life, especially considering the challenges he deals with day in and day out. He’s matured quite a bit this past year, more noticeably so than any past year. The self he presents to the outside world is considerably more self reliant, intuitive, and communicative than the one he shares with us.

I suppose that’s typical of most teens, but knowing that he uses communication resources fairly regularly at school and during this past summer at camp, sharing deep, considered thoughts, like when asked what he has had to persevere during his life, he answered that he’s persevered through several surgeries and recoveries, and then conveyed that one of his future concerns is what will become of him when he graduates from high school. Like I said, deep, considered thoughts.

He continues to love music, and is willing to try new bands and singers, but in times where comfort is needed, still reverts to favorites from his early childhood. He’s the same way with television programs. He can watch endless episodes of Little Bill and his favorite cooking shows (Barefoot Contessa and Pioneer Woman) but now has a great love of Modern Family. There’s less of a willingness to try new programs despite the endless accessibility to heaps of programming he would likely love if he gave it a shot.

He loves sports, and water activities, though if asked, he’d say skiing is his favorite. We’re building a swimming pool for him after years of consideration, because he’s always thrived in water, and never as much as he has this past summer doing aquatic therapy with a new therapist. His last hip surgeries left him not able to stand or take steps but since working with her he’s building so much strength that he’s standing tall, taking steps in the pool wearing 5lb ankle weight. With the strength comes confidence. Having a pool of our own will give him the opportunity to move his body at the end of a long school day, sitting, or on hot weekends, and it will inherently boost his social life because inviting friends to swim is an easy, fun social activity.

Baseball too has become a fun, social activity. He has friends who play in his Champions league, and friends who volunteer as buddies in the league. He enjoys the thrill of “running” the bases (as fast as his buddies can push him) and the cheers he gets as he passes each set of bleachers. The smile is infectious and elicits cheers from both sides.

High school is going well. Now a sophomore, he continues to love riding the bus to and from school, especially because he has a good friend who rides too. They listen to music and watch cooking videos on his Tobii. He has friends in class and if his recent report card is any indication (straight A’s), is focused on doing well in school. Knowing he’s happy at school, simple as it may be, is a huge relief.

So all in all, he’s doing well at sixteen.

He and I have talked about some of things that cause him sorrow, one of the biggest being that this is an age when most of his friends are learning to drive and getting their licenses. He knows he won’t be. I’ve told him that if he can get to a point where he can successfully communicate his needs on his Tobii, we could consider a ride share service sometime, or more to his liking, he could drive with friends. But he has to be able to clearly make his needs and wants known. I see it as incentive for him to be more reliant on the device.

He wants to have a first kiss. He has loved girls since he was small and he has loved specific girls at times in his life. He had a girlfriend last year in school (she’s since graduated), and after observing them together one night at our house when she came over to watch “SING”, I could feel the giddy love between them. She also has cerebral palsy so they sat in chairs next to one another and spent the movie trying to hold hands and making eyes at one another. The feelings were there and I wish I could have better facilitated their evening so they could be nearer to one another. It was pure sweetness.

He wants to spend time without his parents. This summer we had an amazing caregiver for the last couple of weeks with whom he did so many fun things and who brought out the best in Cole. I think he’d like to have someone like that in his life more consistently so that he could go to the mall on weekend day and shop and wander, or who could take him to the movies or lunch or out with friends. It’s on my list…it’s just hard to find someone quite a special, as perfect a fit, as we had this summer.

All pretty typical things boys want at sixteen.

To me, he’s forever going to be my baby. I don’t mean to suggest that I view him as a baby in anyway. He’s my heart. He’s the reason I exist. We have a connection to one another that sometimes takes my breath away. When he’s feeling disconnected from me, and I lay my head down next to his or reach out and take his hand, the look he gives me is that of pure love. It melts me to the core.

For sixteen years I’ve been blessed to be his mom. My experience is not the typical mom experience, but it’s a journey that has shaped me as a person in ways nothing else could, and it’s my been my privilege and pleasure to be known as Cole’s mom in many circles.

Happy Birthday to my beautiful boy, my joy! I wish you could stay sixteen forever…

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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.

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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SOUND OF YOUR VOICE
September 26, 2016

A friend recently shared information about a service that can create a voice for people who do not speak and rely on the use of a voice output device to communicate. Vocal ID can create a voice that closely resembles what your actual voice likely sounds like by using both sound recordings of utterances if you can make them and accessing a voice bank they have to find your vocal match.

I love the sound of Cole’s voice when he uses it successful to speak, and especially when it rings with laughter. I can’t quite imagine how I’d feel hearing him speak and sound like him. The voice his Tobii device uses is a computer generated voice that is somewhat age appropriate, but a voice that is shared by countless others who are of similar age and sex and who use voice output devices. It’s not unique.

Our voices are one of the most unique things about each one of us. With closed eyes, I think I could correctly identify most people I know by their voice. Cole’s is a voice I never imagined hearing, save for the limited vocalizations he makes. To have conversations with him using his Tobii but sounding like Cole would be overwhelming and life changing. I feel like conversation becomes that much more intimate in knowing it would be his voice, unique to him.

I’m just starting to explore how to go about having his voice imprinted and put on his Tobii. I’ll share more as I myself learn more and begin the process. I signed up as a donor too, to bank my voice with the hope that it could be used to help shape someone else’s own voice.

Stay tuned…

 

 

 

SPEECHLESS
September 22, 2016

A new television series, a family sitcom, debuted last night on prime time ABC called SPEECHLESS. The show revolves around a family of five, where the eldest son, JJ, has cerebral palsy and depicts the inner workings of this family as they navigate life.

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I heard about the show early on because someone approached us about having Cole audition for the role of JJ since he’s kind of living that character already and he’s shown interest in performing over the years. After consideration, he decided not to. I think nerves and the start of high school made him think it might be too much, and he’s probably right.

The boy who earned the role is good. He too has cerebral palsy, though I suspect he does actually speak. There are certain truths about the character that wouldn’t be in the show if he actually used a communication device to speak because either he, or his parents, would know better. They wouldn’t be seeking a “voice” for their son. They still would want a wonderfully capable, engaging support for him at school, but not to serve as his “voice”. JJ uses a laser pointer in one scene so I questioned why he would not have a voice output device that operated with a laser pointer, or like Cole, by eye-gaze?

Despite my natural predilection for pointing out the things that I think are wrong with the show, which I know are things that only I would notice or care about (or perhaps other green parents), there are a great many things that are right. I’m thrilled that there’s a family not unlike my own on television. Families of all sorts are now represented on television and finally ours. It’s a huge thing to make something like a kid being in a wheelchair, attending school, and out in the community, a familiar thing.

The value in depicting a family like ours, showing some of the struggles and challenges, but more importantly, the regular life joys and relationships and dreams, is priceless. JJ, like Cole, is a boy who wants to be defined by his interests and abilities, not by his disabilities. He’s a funny, thoughtful typical high school boy, who happens to have cerebral palsy.

The beauty of Speechless is that they do a great job of portraying everyday family life, which in most ways is no different than any other, except that some of the challenges they deal with are a little different. Every family has challenges, all siblings feel neglected at one time or another, all parents fight for what their kids need and all kids are kids, no matter what their diagnoses.

My hope is that by having a family like mine on prime time television being portrayed in an authentic manner, which includes the good, the bad, and the ugly and everything in between, with humor (because who doesn’t find humor in some of the craziness we deal with?), care, and honesty, will make people understand that despite some obvious differences, at the heart, we are all more a like than we are not.

MAKING PLANS FOR NIGEL
September 19, 2016

My current conundrum is navigating the teenage social life, without appearing to be doing so.

Cole’s at an age where most of his peers are managing their own social lives, with parents providing only transportation input be it, actually driving, or providing access to an Uber or Lyft account, and setting some general boundaries like curfews. Kids text each other to initiate an outing, activity, get-together, and to make arrangements.

Cole doesn’t text, or talk, and doesn’t receive many texts, and never texts inviting him to hang out. He might enjoy doing so but since he’s not part of that very prevalent social networking world, he’s not immediately thought of for social activities. Truthfully, much as it pains my heart, he’s probably not thought of for such things regardless of his social networking status.

That doesn’t mean I’m not keen to somehow help him facilitate a social life of some sort, even if it’s a bit challenging to do so whilst trying to remain behind the scenes. I’m learning that this is much more difficult to manage in high school, where parents are not connecting the same way and not being on campus makes it nearly impossible to know which kids he might actually want to see outside of school.

He didn’t see friends much during the summer, which was tough and more noticeable to him than it is during the school year when weekdays are long (he’s gone from 6:15am-5pm) and weekends have activities already scheduled like baseball league, swimming lessons, and the dreaded homework. There’s less free time to fill so the absence of friend time is not as obvious.

However, boy cannot live by hanging with the parents alone…he needs opportunities to spend time with friends and to do some socializing outside of school without hovering parents. (Not that I intend to hover but the reality of Cole is that he does need some adult support most of the time). A few old friends came over this past Saturday evening to watch a movie and very informally celebrate his birthday. It was a treat to have pals who know him well and with whom he can relax, and Dan & I can pretty much fade away while they hang out. Hearing not only his laughter, but theirs from the distance of a couple of rooms made my heart swell. If only I could figure out how to make nights like that a monthly thing…

I’d also love to figure out if there are any new school friends he might want to hang out with. I keep hearing about a boy named David, who I’m told by Cole’s teacher is one of Cole’s favorite friends at school, despite Cole telling me otherwise when I ask about him. I know he’s just goofing around when I ask but I also don’t know that he’s ready to make the leap of inviting him to go bowling or something on the weekend. Time will tell. In the meantime, I’ll be working on the next movie night…

I AM THE DJ (Series – 13)
September 16, 2016

Lucky 13!

It’s been quite a while since I created a new playlist for Cole. I rely on Spotify searches for bands he might like and did create a failed summer play list, a 70’s themed walk through my early teens, for our road trip up to Oregon to visit my mom. It seemed appropriate to road tripping in northern California and southern Oregon but he hated it. Because he rides the bus to and from school now, car music is now primarily weekend fodder. Thankfully he’s open to new stuff and not as tuned into the little kids music of yore, unless he’s particularly cranky or tired, when the comfort factor kicks in.

My husband gave me a record player for my birthday earlier this month and we’re starting to drag some of my hundreds of records in from the garage where they’ve been resting for the better part of two decades. It’s an eclectic representation of my life, pre-marriage, pre-motherhood. Some treasures that never made it to the digital world. I’m excited to listen to some of my favorites on vinyl and to introduce Cole to more of my youth!
Here’s the playlist he’ll be sampling this weekend whilst running around town with me:

Tighten Up – Black Keys
Wish I Knew You – The Revivalists
River – Bishop Briggs
Airwalker – Jeremy Jay
Parallel Horizontal – Marine Research
The Glow, Pt. 2 – The Microphones
Jessica – Lime Spiders
Spirits – Strumbellas
Righteously – Lucinda Williams
Veni Vidi Vici – Black Lips
Going the Distance – Zipper Club
Girls – Beastie Boys
It’s Alright For You – The Police
Roll to Me – Del Amitri
Juicebox – The Strokes
Crash – The Primitives
Think I’m In Love – Beck
Giant – Banks & Steelz
I Know – Shovels & Rope
The Ledge – The Replacements
I’m In Love – Teenage Fanclub