Archive for the ‘Joy’ 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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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???

 

 

 

I AM THE DJ (Series – 11)
November 20, 2015

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The whole high school search has me in knots these past couple of weeks so I really want to try to go into the weekend and Thanksgiving holiday week feeling a little lighter in spirit. Music does it for me. It always helps my mood and truly has the ability to lift my heart and to get my body revved. Cole shares this synchronicity with music. He loves it and it can make or break a drive. He’s very ready for holiday music, which if you recall, I desperately try to enforce the “not until after Thanksgiving policy” upon him We’ve had a couple of outings already where nothing would satisfy but holiday music, and I’m thankful that the Bad Religion holiday album exists because to him it’s holiday music, and to me, well, it’s Bad Religion…(who by the way I grew up with…same junior and senior high school..).

I haven’t posted a playlist in a while but I’ve got one ready to play for the boy tomorrow when we are out and about doing some pre-Thanksgiving shopping and prep:

  1. CAGE THE ELEPHANT – Mess Around
  2. TONES ON TAIL – Go!
  3. ALEJANDRO ESCOVEDO – I Wanna Be Your Dog (Cover)
  4. BELLE & SEBASTIAN – I Want the World
  5. MARCHING CHURCH – Hungry for Love
  6. ALESSIA CARA – Here
  7. The FRAY – Heartbeat
  8. BRICK & MORTAR – Train
  9. ECHOSMITH – Cool Kids
  10. KING CURTIS – Soul Serenade
  11. KAYA STEWART – In Love With A Boy
  12. ADELE – Lovesong
  13. JEAN-MICHEL BERNARD – Generique Stephane
  14. DEVO – The Girl U Want
  15. THE PRETENDERS – Kid

 

ALL TOGETHER NOW
November 11, 2015

We’re homebound for the holidays. We will spend Thanksgiving with friends, and then look forward to our traditional Christmas Eve with the family, close and extended, at my brother’s house, and likely New Years Eve with friends. We’ll probably sneak in a Hanukkah latke fest or two as well!

This will be our second Thanksgiving spent with dear friends, and their extended family and friends, a warm, welcoming group of lovely people, and kids who welcome Cole into their fold of games and fun. It’s a relaxing evening, full of interesting conversation, laughter, and really great food and wine.   I’m already checking out recipes. I love any opportunity to cook for lots of people.

Traditionally I do a latke night in honor of Hanukkah one of the eight days (my husband is a non-practicing Jew). We’ve had friends and/or family over, and we’ve done it with just the three of us. I love making latkes and it’s our annual excuse to over indulge in their glory. Some years we’ve lit the candles in the Menorah each night, and others we’ve foregone this lovely tradition.

Christmas Eve is Cole’s favorite night of the year (we all love it but no one more than he). He loves the traditions that my brother and his family have cultivated over the past fourteen years. The evening rarely deviates from the routine, which is one of the reasons Cole loves it so much. It works with his sensibilities. It sort of takes on a movie like quality as we move from warm chatter, festive cocktails and nibbles, to a traditional roast beef dinner, complete with Yorkshire pudding, to all donning wacky Christmas hats to sing “The Twelve Days of Christmas”, to Santa dropping by for some fun with the kids, the holiday trivia challenge which leads to the White Elephant gift stealing game, and finally coffee and sweets. We leave happy, exhausted, and already looking forward to the next year.

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For the past few years we’ve done New Years Eve with friends. One family has generously supplied the house, I try to do a lot of the cooking, and we fill it out with delights from others. The evening involves lots of yummy cheese and wine and champagne, and more great conversation, laughter, and cheer. The kids do their own thing in the den, starting out with a movie, and moving to watching the ball drop on one of the network shows. It’s a perfect way to end and start years – sharing time with people we love.

This year, my in-laws will be with us at the end of the year. They’ll be here for a couple of days prior to Christmas, and then back again just after through the New Year. We’ll likely host a couple of small get-togethers for them. They have some friends here in LA, and also to give our LA based family a chance to visit with them as well. I’m looking forward to seeing them, and especially for Cole to have some time with them. They live in Hawaii and it’s not that easy, or affordable, for us to travel there often, so I feel like it’s important to make the visit special.

In the scope of all of this, I also want to try to host a couple of casual, almost open house type get-togethers. I feel like the holidays are a perfect excuse to open up your home and invite friends from different walks of your life to come share some cookies, or wine, or dinner. I’m feeling the need to connect with people I love. Maybe it’s a response to the somewhat isolated summer we had. I’ve been wanting people around and to be around people.

Perhaps also there’s a part of me that knows some of these traditions will likely change next year. Cole and his friends will likely all attend different high schools, my eldest niece will be in her first year of college, who knows where, and lives will have moved on. It’s all part of our natural evolution but it makes me want to wrap my arms around everyone and hold them close, never letting go.

Damn, I’m getting really sentimental as I age!

LOVE AND HAPPINESS
November 9, 2015

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

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

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

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

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

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