I’LL BE THERE FOR YOU (The Rembrandts)
December 9, 2019

We’re closing our 6th day of pretty much living at Children’s Hospital LA (CHLA).  Cole was admitted last Wednesday and will be here until the end of the year, maybe just into 2020.  We’re surviving.  Actually better than surviving.  We’re getting into a routine where we’re both hanging out with Cole during the day and then one of us goes home to attempt a good night of sleep and to spend some time with Luna, our poor, needy ten year old Golden Doodle.  Then it’s back to CHLA.

Cole’s days are filled with lots of nurses, doctors, residents, and various support staff popping in for vitals, to add weight to his traction, to help us with anything we need – like transferring him from the bed to the traction wheelchair for an outing or helping with other needs.  He’s also had a barrage of very welcome and much appreciated visitors.  At first it felt overwhelming but now that he’s more settled and doing remarkably well with the traction, the visits have been a great source of joy.  For him, and for us.

It took me a long time to understand that it’s okay to ask for help, support, or care.  Early into my parenting journey, I did my best to be an island.  I have always been a pretty self-sufficient person and in fact often served as the maternal one amongst my pack of friends when I was single. I’m pretty good about jumping in when someone is in need and am always at the ready to help. I’m appreciative when someone recognizes that I am in need, but in the past it was hard for me to fully accept it.

Nowadays, I try to ask.  I reach out to friends when I’m struggling and I have tried to build a support network so that I don’t have to go through things alone (I should clarify that my husband is the biggest part of my support and a great partner – but he’s also sometimes going through the same things as I am such as Cole’s current medical situation).  I was part of a special needs mom’s group for a while, which I think is where I  both realized how much I like having people in my life who understand some of the unique parts of my parenting experience, and how valuable regular sharing is to me.

I’ve learned that being an island is not what’s best for me.  I like knowing that people are thinking of me and wishing my family well, particularly in high stress situations like the traction and looming spinal fusion surgery.  I also really like being able to show the same support and care to my friends, near, far, and in the social media stratosphere. It’s one of the most positive aspects of social media – the strength and heart of many.  I know not everyone feels this way but having gone through some of Cole’s surgeries quietly and the more recent ones more publicly, I can honestly say that the impact of sharing truly helps to quell fears, stand tall, and to make it through the long days and nights.

So keep the love coming and know that if ever you find yourself in need, I’ll be there for you.

Posted in cerebral palsy, Connectivity, Family Life, Friendship, Gratitude, Kindness, Special needs parenting, Stress | Tagged: , , , , , , | Leave a Comment »

COMMUNICATION BREAKDOWN (Led Zeppelin)
November 12, 2019

Twenty something years of being together and I’m realizing that my husband and I have some serious communication issues.  Instead of developing a shorthand, instinctual and deeper sense of understanding one another, as couples are apt to do after being together for so long, we seem to be doing the opposite and it’s causing hurt, frustration and distance.

He thinks I treat him disrespectfully, with responses that are mostly piss and vinegar.  I think he takes things too personally.  My being frustrated when I get home from a long day at work, spend three of those hours in stop and go traffic each day, needing just a few minutes of down time to transition to being home and taking a breath, is not a sign that I’m not happy to see him or that I see him as the cause of my angst.  I’m simply not always able to burst through the door, offering smiles and kisses the second I get out of the car.  It’s absolutely nothing personal.

I’m not always kind.  I know this of myself and I’m not proud of it.  I work hard to try to be better but I think the unfortunate nature of marriage or relationships is that we have a tendency to take things out on the people closest to us.  Part of that is simply proximity.  Part of it is a sense of trust – people we love can see us at our worst and still love us.  Part of that is a belief – however wrong it may be – that they know they’re not the root of the anger and frustration just the dumping ground.  I’ve come to understand that these theories are not actually true.  Particularly in the case of my relationship, the latter.

I’m not sure how one goes about changing patterns and habits that are well established from childhood.  I suppose the fact that I can admit to or have awareness of my behaviors is the first step, though I struggle to get past that one step.  I also feel like I can’t be the only one stepping.  I can take responsibility for my words and my actions but I cannot influence how they are heard or taken.  I can’t change someone’s expectation or anticipation of my presence.

The nature of our communication is stunted in some ways because we are almost never together without Cole present as well.  it’s hard to have adult conversation, or even complete conversations about anything without him being there and often not pleased about us talking to one another or the feeling that a particular conversation may not be best had in front of him (like discussing our concerns about his upcoming surgery or my husband’s travels or a night out).  It’s not natural and we rarely pick any of those conversations back up because we’re almost never alone, just the two of us in a room when we can have real conversations.

Anyone else have communication issues?  Any thoughts on how to improve things?

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I recently heard about a colleague’s attempt to do so by having a night a week where she and her husband turn off electronics and spend the evening playing a game and talking, be it cards, Yahtzee, or whatever.  She says it’s done wonders in terms of them appreciating one another more…A fun idea that sounds worth the try!

Posted in Connectivity, Conversation, Family Life, Kindness, Special needs parenting | Tagged: , , , , | Leave a Comment »

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

Posted in cerebral palsy, Conversation, Family Life, Fear, Friendship, Gratitude, Life, Special needs parenting | Tagged: , , , , , , | Leave a Comment »

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 »

WITH A LITTLE HELP FROM MY FRIENDS (The Beatles)
September 18, 2018

I saw a post today, shared by a friend in Australia, about a friend of hers who just had a baby. There were complications with the delivery and her daughter has been diagnosed with cerebral palsy.  The post was asking for donations for the baby’s current and future care.  I wanted to write on the post that with seventeen years of experience with a similar child, it’s going to be okay and that despite the dramatic entry and overwhelming sense of the unknown, life will be joyful and their child will be loved and happy.  I held back though because I’m never quite sure if people want to know this while they’re in the throes of trying to understand their new reality.

This doesn’t just apply to this particular situation.  I struggle with it in all kinds of situations.  I have come to realize that often people don’t want to know that there are other people who have walked the path before them and can shed some light on the journey.  I also worry that it comes off as “know-it ally”, which is never my intention.  So I often opt to hold my thoughts.

I, for one, am truly grateful for advice and support, and I cherish the guidance of those who have similar parenting journeys because between all of us working together we have quite a network of research, connections and experience that enriches the lives of our children beyond what one lone set of parents can do no matter how savvy.

One of my fantasies is to one day create a compound living situation, preferably near the beach, with a therapeutic swimming pool, accessible gym complete with an infrared sauna on the property, where other families like ours could all live with their 24/7 adult kids (either in independent homes or with family) and support one another.  Some of us have kids that will likely remain with us for life but there are ways to provide some independence for them within a fixed community and to allow parents to have some independence as well.  It’s a fantasy but not completely outside the realm of possibility.

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We can go it alone but in my experience it’s always better with friends…

 

 

 

Posted in cerebral palsy, Family Life, Friendship, Gratitude, Kindness, Life, Special needs parenting | Tagged: , , , , , | Leave a Comment »

TALK TO ME (Chris Isaak)
September 15, 2018

Cole’s first junior year report card arrived yesterday.  Straight A’s. He’s fairly consistently receiving A’s and a very occasional B on his high school report cards and always with E’s, and is always proud of himself when the grades are revealed.  We are proud too, of course.  For Cole, the grades are both a mix of subjective grading, his effort, and his understanding of the given subject.  He has modified work and the benefit of one on one class time with his Special Ed (SpEd) teacher.  It doesn’t diminish the grades and is certainly reflective of the attention he puts forth in class.  He takes a fair amount of pride in maintaining his grades and in the attention he receives for doing so.

I just wish he put forth the same interest and effort in developing some of his communication skills and independence at home.  He would gain so much by engaging in conversation with people outside of school, including me and his dad.  He has friends who desperately want him to use his Tobii (eye gaze generated voice output device) to talk with them.  Teens, even understanding, kind hearted teems, don’t always welcome the parent invasion when they’re hanging out.  Having time with friends, independent of a parent or even of a support adult to help facilitate conversation, would be so incredible for him.  It’s such a valuable facet of friendship.

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I’ve gone so far as to suggest to some friends that they tell him that they won’t chat with him until he starts chatting with them using his Tobii.  His friends are too sweet to listen to me and continue to talk to him despite his aversion to the Tobii.  He met a girl this summer who is very similar to him in diagnosis and also uses a Tobii, though she is happily reliant upon it and uses it well and often. I’m told she pressed him to use it during summer school and he was slightly more receptive, which makes me hopeful that he with the right motivation he’ll warm to it.

I understand part of his reluctance, or disdain, for the device.  Cole’s a people person.  He’s very keen on eye contact and adept at communicating some of his needs and reactions through small sounds and various facial expressions and smiles.  The Tobii obstructs his direct view of people he’s “talking” with.  It’s also taxing to use, both physically and mentally, so an element of laziness factors in too, especially if he’s asked to use Tobii with his dad and I.  We’ve developed a strong understanding of him, but even with us there’s so much left to our interpretation.  He’s often just not bothered enough to be frustrated or care. I really wish he were.

I just want him to use his voice…to express his thoughts, opinions, and needs.  I want him to deepen his friendships by opening them up through mutual communication and the intimacy that comes from friends sharing. I want him to engage new people in conversation or to initiate conversation. I want him to show interest in other people by asking questions or simply saying “Hello” aloud.  I want him to expand upon his education by using his voice to express his knowledge and understanding.  I want all of these things for him…

If only he did…

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