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!)


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???




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!