Archive for the ‘Teenagers’ Category

Back in the Saddle Again (Aerosmith)
September 28, 2021

It’s me…back after nearly two years. I’m getting back to writing!

I left off with Cole still literally hanging out, in traction, waiting for his spinal fusion surgery at CHLA. We ended up there for forty seven days. Yes, you read that correctly – 47 days! And then due to some complications from pain relievers that caused internal bleeding, we were back for another several days after being home for just a few. The surgery itself was hugely successful. Cole’s spine is straight and long, his organs no longer smushed up into one side of his body, and he gained almost seven inches in stature. The surgery also improved his head control so his access to his eye-gaze Tobii communication device is markedly better and he’s gained confidence from his face front, sitting tall presentation.

We found ourselves settling back at home and into our usual work/school/life routine for about six weeks before Covid19 struck. Dan and I both started working from home exclusively March 18, 2020 and Cole stopped school right after that. On one hand, we’d just spent a month and half together in a single hospital room so being quarantined to our house with a yard and neighborhood to wander felt fairly luxurious. We adapted our days to incorporate Cole’s on-line school needs as well as his entertainment and personal needs. Cole graduated from high school, completing the year on Zoom and having a drive-by ceremony. We created two offices spaces within the confines of our small home and settled into the new (covid) normal.

Oh, and we adopted two kitty brothers who arrived the night of March 17, 2020. They were about a year and half old and I had fallen madly in love with them on a foster site I found whilst we were in the hospital. I’d been keeping an eye on them since late December 2019, and happily they were still available to adopt in March! The foster would only allow them to be adopted together because they were completely devoted to one another (still are). The boys were part of a litter she called the “tea kitties” – each kitten in the litter was named after a tea. Our boys are Oolong and Earl Grey. We kept their names because they’d had them for a year and half already and it felt mean to rename them but had we done so they’d have been Nigel and Reg, respectively.

At this juncture late in September 2021, Cole’s been back to in-person school at a “CTC” – career transition campus – a post high school program sponsored by the LAUSD. The program provides some continued education, life skills, and for those who are able, work training programs in a variety of different fields such as data input, baking, retail, silk screening, car detailing, farming, and more. Cole spent his first year on zoom and is now happily back to riding the bus to and from school, with peers and pals, and enjoying the program. He’s back at iDance and just finishing up two sessions of his summer favorite, aquatic therapy. Dan and I are both still working from home, through in October I’ll start going in a couple of days a week as our offices slowly start to reopen.

It astonishes me how adaptable Cole has been through all of these challenges he’s faced these past couple of years. There have certainly been some low points because being stuck in hospital and then at home with just us would be hard on any kid, any teen, but he got through it all without serious issues. The one thing he implemented, as a measure of self-salvation I suspect, is that he no longer willingly will join us in the living room or dining room to eat or watch TV or hangout. His bedroom became, and continues to be, his sanctuary. He enjoyed going on walks, drives, and visits with us during the worst of the quarantine, and he swam with us and enjoyed having friends over when it started to feel safe to entertain outside in the backyard, but (if I’m honest) like many teenagers, he really didn’t want to hang with us anymore than necessary and for a guy who has little opportunity to exercise his independence, we respect his decision. It saddens me sometimes but I do recall wanting my alone time as a teen so I do understand.

A big impetus of starting to write again is that I find I live in my head and these past eighteen months have not helped that and in fact have made it worse. Writing has always been the best way for me to purge my overloaded brain from everything it’s striving to sort out and process and create. Writing helps to keep me nimble. So, I’m back. No one may be reading (yet) but the simple exercise of writing is enough for me. I actually have a couple of writing projects I’d like to attempt so resuming a daily or weekly practice of writing will be a useful practice in creating as well as the brain purge. I feel positive and excited about what lies ahead!

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IT’S DIFFERENT FOR GIRLS (Joe Jackson)
September 28, 2018

I was not an innocent young thing when I was in high school.  I snuck out to go see bands play in Hollywood, went to parties as often as I could, and kissed a lot of boys.  I had a group of close girlfriends, what would now be called my squad, who I spent most of my free time with, sometimes including some of our guy friends in the mix, or meeting up with them wherever we would land.  We all experimented with drinking, some drug use and boys.  Not all of us left high school virgins, but some did. We weren’t wild or reckless.  We were actually considered “nice” girls.  We were pretty typical teens in the early 1980’s.

I met my first boyfriend when I was 15, and was 16.  I was in 10thgrade and he was in 11th.  We dated and hung out for quite a while before he became my first. I had it in my head that I should wait until I was 16 to have sex.  I don’t know where that notion came from but wait we did.  Despite having a caring relationship, we broke up when I cut my long blonde hair short as I got more into punk rock.  So much for young love!

Your first time is supposed to be the cherished memory you carry with you.  The general sweetness of the nerves and fumbling and genuine belief that you are in love and this is the next, natural expression of that young love. At the time, it was all of that…plus in all honesty, it was fun.

I didn’t have a boyfriend for a while after that first relationship.  I kissed a few boys at parties (kissing was probably one of my favorite activities – I know I’ve written about my love of kissing before) but I didn’t have my second boyfriend for quite a while.  However, my opinion of sex was forever changed not long after the breakup.

One Friday, we all found ourselves at a post football game house party. A fairly usual occurrence. To this day I remember what I was wearing (A black mock turtle next sweater that was my mom’s when she was in high school, a wool pencil skirt, fishnets and black pointy toe pumps) and I can picture the front entrance of the house, double doors, with the garage and driveway to the right, with a large BMW sedan parked in the driveway, close to the garage door. There were shrubs that lines the walkway to the right of the door that led to the driveway.  There wasn’t a light on the garage, but the porch light glowed brightly.

We arrived late.  The party was already in full swing.  Music was playing and kids were spilling through the sliding glass doors in the living room out into the lit up back yard. A guy I liked was there and though he didn’t often show me any attention or regard, he came up and started talking to me.  He gave me a beer and we continued to talk about bands we’d seen.  It was loud and he took my hand and led me out to the front yard.  No one was out there.

He kissed me and I kissed him back, thinking, wow he likes me.  He moved me over to the driveway, backing me up against the garage door, still sort of kissing me. Then he moved his hands to my shoulders and started sliding me down the door until I was on the cement driveway behind the car.  I felt uncomfortable and nervous and suggested we go back inside.  I started worrying about what was going to happen next and yet I couldn’t quite escape him.  He still had me pinned down and was sort of squatted over me.

He pulled my skirt up and reached down and ripped my fishnet stockings open as I squirmed and tried to get away.  Then he pushed inside me.  No fanfare, no utterances of care.  It was over quickly, though it felt like ages laying there in the dark, on a cement driveway, pinned between a garage door and BMW, while my friends and lots of other people were inside having fun.  All the while he acted like it was a normal thing.

No one worried that I wasn’t inside the party because my friends knew that I thought he was cute. They figured we were making out.  They were probably happy for me that he had shown interest in me.

He actually extended a hand to help me up after, though he smugly went back inside alone, while I attempted to pull myself together and get my clothes back in order.  Eventually I went back in, found a drink and shook.  I couldn’t understand why that had happened and I kept replaying it, wondering what I did to make him think that it was what I wanted or that it was okay.  I doubted myself.  I blamed myself.  I didn’t understand.

Date rape wasn’t defined for at least another decade after that experience.  Those kind of experiences were brushed off as boys getting carried away or girls leading them on.  You know, you can’t get a guy all lathered up and not let him get off.   Peers weren’t supportive and parents were fairly useless.  You were not believed, you were judged.  You learned to just live with it and carry on.  If you were lucky, you didn’t get pregnant (because this was early 1981 and AIDS was just emerging so condoms were not readily used). If you were lucky, no one found out and you weren’t branded a slut.  If you were lucky, this wouldn’t have happened to you.

Sadly, it seems that today, almost forty years later, it’s not that different.

 

 

 

 

 

 

Posted in Conversation, Family Life, Fear, healing, High School, Life, Sexuality, Teenagers | Tagged: , | 1 Comment »

FOREVER YOUNG (Eddie Vedder)
September 20, 2018

Cole’s turning seventeen today.  Yes, that’s right, the boy is seventeen years old.

It’s hard to believe that we’ve been riding the wave of his life for seventeen years.  When we became parents to Cole in particular, our own lives ceased to be our own lives.  I think it’s a reality of parents with 24/7 children in a way that is vastly different from parents of typical children.  In many ways, kids like mine are forever young.

Cole’s at an age where most his peers are wildly independent.  They’re staying home on their own, managing much of their social lives and school activities, and many of them are driving.  They’re all starting to contemplate the move from high school to college and hunkering down with their studies to ensure they have top grades, interesting community service in place, and strong SAT scores.

Seventeen looks very different in our family.  In some ways it doesn’t look much different than sixteen, or fifteen or fourteen, which in all honesty breaks my heart, because I know eighteen will likely feel the same.  Cole has delays in his development and will likely never pass the four foot mark.  In many ways he’s neurologically on track, but in other ways his comfort is still found in the same things that brought him comfort and joy when he was little.  His needs remain high, though to us fairly simple and second nature.  We struggle with the same obstacles – encouraging him to want independence, to use his voice (his Tobii – an eyegaze voice output device), and to develop new age appropriate interests.

Yet, he seems content with his life.  He loves high school and has made some good friends who he sees outside of school too, while still maintaining some of his life-long friendships, and he does well in his classes, excepting his lack of interest in using his Tobii has proven to be a frustration to his teachers and peers as well.  Outside of school he’s still happily participating in iDance and enjoying playing in his Champions baseball league.

He’s developed an interest in photography thanks to his summer spent hanging with Nelson.  Art has always been something he enjoys dabbling in but the interest in photography is new and we’re hoping to help him to expand it.  We bought him a camera that he can operate using an iPad/iPhone as both the viewer and button or a switch to take the shot and are keen to see where this hobby takes him. In typical teen fashion, any curiosity we show in his photography is met with eyes rolling and the shut down…

Ebbing on seventeen has also broadened his willingness to expand his musical repertoire and his TV viewing.  There are still times where only the music of Ralph’s World or Sesame Street or endless Holiday music will satisfy him but there are other times, more frequent times, when I can introduce new bands or playlists to him and he’s pleased.  I’ve been having the success with his TV down time. I’m not willing to watch endless hours of Little Bill or even The Barefoot Contessa, so constantly try new things and movies and lately, as he neared seventeen, he’s been a willing viewer. It gives me hope.

I’d love it if he’d show an interest in books.  I feel like resources like Audible could give him some independence and off screen time but still engage and entertain him but he’s not quite there yet.  I love to fall into a good book and so does my husband. To have Cole develop the love of a good book would please me to no end.  Oh the places, people and adventures he could explore…

Turning seventeen brings him a year closer to being an adult and having more adult feelings and curiosities. He has always been very fond of girls and has had crushes here and there over the years but this summer he fell hard.  It’s unchartered waters for us and I don’t really know what romance looks like for him.  I feel like it needs to be treated differently than the way I facilitate or manage friendships, but I don’t know exactly what that means.

I am keenly aware that much of my mixed feelings about Cole aging, or not, are just that, my mixed feelings.  Feeling blessed to have my son in my life, and loving him more than I can possibly convey can live with me sometimes mourning the loss of typical experiences both he and I would have had if things were different.  I don’t know if he considers “what if” in his own mind, and I avoid it when I can, but I’m human and I sometimes can’t help but wonder, or be sad.

IMG_1768My boy is seventeen today. Yes, seventeen years old!  He’s remarkable and brings grace to every day of my life.  I celebrate him today and everyday and hope that he’ll remain forever young…

Posted in cerebral palsy, Family Life, Gratitude, High School, Independence, Life, Motivation, Special needs parenting, Teenage angst, Teenagers | Tagged: , , , , , | Leave a Comment »

MANIC MONDAY
October 9, 2017

Generally I don’t have anything against Mondays. I view Monday as the beginning of the week and I tend to like beginnings, as opposed to endings. The start of things, days, events, have an optimism and hope that aren’t as certain to be carried through to the ending.manic-monday

This morning the boy struggled to wake and was grumpy. Granted, I’m not keen on our 5:30 wake-up time either and I find as he matures into his teens, it’s harder and harder for him. Don’t get me wrong he’ll never be the sleep until noon kind of teen, sleeping in to him is more like 6:30am or, gasp, 7:00am! I think he’s just a point where his preference is not be awakened, but to wake naturally, even it were to be at 5:30am, which is what happens often on weekends, when he can actually sleep in! Then, he wakes happily, wanting nothing more than to lounge in bed, watching something mindless, or snuggling.

This morning though, he was a bit of a bear. My solution? Loud music and crazy dancing. First laying next to him, helping to move his arms and waving my hands and legs in the air like an upturned beetle, then me dancing around the room while he shook off his morning blues and eventually laughed, and laughed. On occasion, I can be hilarious! It worked though and to my mind, a quick bit of dancing is a nice way to get the day started.

With that in mind, I haven’t shared the songs that make up my post titles for quite a while because I’ve been so terrible about posting so I thought I’d use this post to do so. Since the last time I shared, here are the songs and artists of recent blog titles:

Manic Monday (The Bangles)
Don’t Stop Believing (Journey)
Swimming Lesson (The Eels)
Sixteen Forever (The Dictators)
Just Like Starting Over (John Lennon)
Changes (David Bowie)
Lean on Me (Bill Withers)
Sharp Dressed Man (ZZ Top)
Summeritme Blues (Eddie Cochran)
Sound of Your Voice (Bare Naked Ladies)
Speechless (Michael Jackson)
Making Plans for Nigel (XTC)

Looking forward to a cheerier Tuesday…

 

 

 

Posted in cerebral palsy, Family Life, Gratitude, High School, Music, Special needs parenting, Teenagers | Tagged: , , , , , , | Leave a Comment »

SWIMMING LESSON
September 26, 2017

We’re back to our usual routine after what felt like endless birthday celebrations! September is a busy month for us! The celebrating fun as it is, is also exhausting. I’m looking forward to a few weeks of whatever normal life might be considered.

The big fun right now is that we have a giant hole in our backyard, and heaps of dirt, that will eventually become a swimming pool and lovely outdoor kitchen. The project started a few weeks ago and is now hostage to some permitting that requires both DWP and the city to approve, so your guess is as good as mine as to how long that will take.

After years and years of wishing and contemplating the idea of putting a pool in our backyard, my father in law kind of got the ball rolling for us. Cole has always loved water and swimming, and thrives doing aquatic therapy, so it will be amazing for him to have a pool of his own.

It’s also a great social activity for him. He’s at an age where social things have become harder to come by and fewer between. Teenagers don’t really want an adult infiltrating their outings activities, nor are they necessarily mature enough to be asked to be responsible for Cole on a solo outing. It’s hard. But inviting friends to swim and hang out is an easy, fun social activity that they all enjoy and that will hopefully keep his social calendar filled.

We’ve been blessed to have many friends over the years, who have generously shared their pools and backyards with us, so our hope is to pay it forward by having a sort of open invitation to all of our friends to come spend time lounging and swimming. We tend to be home quite a lot and plan to make great use of the new backyard in terms of swimming, hanging out and cooking, and we love to have company for all of those things!

I am already envisioning next spring and summer being filled with afternoons of swimming and goofing around with friends that turn in to casual dinners and night swims. I’m fantasizing about putting a moveable screen outside so we can do impromptu movie nights viewed drifting on floats in the pool or snuggled up on a cozy lounge chair. I imagine my husband and myself doing all kinds of aquatic workouts, including swimming laps, but also enjoying the resistance of water for other aquatic exercise.

I see Cole coming home from school and taking a daily afternoon swim. It will be a fabulous chance for him to stretch out his body and to move a bit after a day in his wheelchair. I can’t imagine how good that will feel to him. The freedom he has in the water is unlike anywhere else. He has more control over himself and more strength in water. And it’s definitely his happy place!

I’m beyond excited about the seemingly endless benefits our backyard transformation will provide! Even looking at the giant hole and mounds of dirt, I can picture the family frolicking in the cool water on sunny days…

I hope you’ll join us!  (maybe not until next spring!)

 

Posted in Backyard Living, cerebral palsy, Family Life, Gratitude, Life, Special needs parenting, Teenagers | Tagged: , , , , , | 1 Comment »

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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Posted in cerebral palsy, Family Life, Gratitude, Joy, Life, Love, Special needs parenting, Teenagers | Tagged: , , , , | Leave a Comment »

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???

 

 

 

Posted in cerebral palsy, Family Life, Friendship, Gratitude, Independence, Joy, Life, Special needs parenting, Teenagers | Tagged: , , , , | 2 Comments »

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.

Posted in cerebral palsy, Family Life, Independence, Life, Motivation, Special needs parenting, Teenagers | Tagged: , , , , | 1 Comment »

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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Posted in cerebral palsy, Education, Family Life, High School, Life, Special needs parenting, Teenagers | Tagged: , , , , , | Leave a Comment »

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…

Posted in cerebral palsy, Family Life, Friendship, High School, Life, Special needs parenting, Teenagers | Tagged: , , , , | Leave a Comment »

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