Archive for the ‘Teenagers’ 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???

 

 

 

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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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…

VOICES CARRY
April 13, 2015

Navigating the world when you can’t speak is tricky. In order to share your needs or to participate in conversations or activities you need to rely on others paying a modicum of attention to you, which is not under your control at all. I see the frustration and sadness in Cole sometimes when people, sadly, including myself, don’t notice he’s trying to express something or vying to be a part of a group conversation.

When he was small, it felt natural for one of us to sit near him so that we could facilitate his inclusion a bit. Most younger children have their parents close even when they’re socializing with other kids. Now that he’s a teen, and going to parties and outings where his friends are dropped off and on their own for the most part, it’s a different scenario.

He doesn’t want to be the only kid with a parent around, and if there is a parent around, he definitely doesn’t want them in the thick of things helping him be part of the group.

But he’s not able do this successfully on his own and friends can’t be held responsible to include him or to make sure he’s an active part of the festivities.

I’ve written about this before but I’m grappling with it because I see him left out of conversations more and more and I see the effect it has on him. And it’s not anyone’s fault. It’s sadly just a reality of his circumstances and I struggle with how to make it better for him.

I don’t have any great solutions and the tough love part of me feels like he needs to accept some of the responsibility in it. He has a communication device that he uses at school, but that he most often refuses to take with him anywhere during the weekends. I understand some of his reasoning as it’s rather large and blocks him from view from people a table, and also blocks everyone else from his view. Not ideal, but it gives him a voice and a means of including himself in conversations, and initiating them too.

The nurturing part of me wants to hire a peer to support him and facilitate his participation. A peer, as opposed to the adult support we do often hire, at least is part of the action too. It doesn’t seem as obvious as having an adult with him. But it feels a little like paying someone to be his friend, and that feels terrible. He’s got great friends who adore him and do their best to include him.

It weighs on me because there’s not really a great solution. He’s got a big 7th grade night time party this weekend that he’s so excited to attend, which is why this is on my mind. I just want it to be everything he hopes it will be…I know I can’t be there to make sure it’s a good experience so it ruminates in my head…If I could change anything for him, it would be to give him his voice…the impact of him having the ability to speak would change everything for him. More so than walking, or eating, or having better motor skills. I’d give anything to hear his voice.

WHY DO FOOLS FALL IN LOVE
April 1, 2015

I had lunch with a friend yesterday. She’s a former colleague, and now friend, and also happens to have a son who is in the 7th grade. Besides both having been our business for nearly twenty years, we also share the intrigue of raising teenage boys. While our experiences are different, we share many common values and have similar interests in raising our boys to be well rounded, kind and respectful.

Both of our boys are starting to develop interest in girls, and she shared that her son recently asked her if she believed in young love, to which she responded emphatically with a NO. I found it to be a romantic notion and if Cole were to ask me the same question, I would probably have answered YES.

I love the idea of young love. I must have fallen in love (or thought it was love) a dozen times when I was young. I think back to certain boys and can remember exactly how I felt at that time in my youth. I must have been thirteen when I fell for my first real crush. He lived in my neighborhood and was the absolute end all be all in my eyes. I used to skateboard past his house as often as I could, hoping he’d be outside so I could talk to him. I dreamed about conversations we would have and would imagine walking to school hand in hand with him. Sadly, he didn’t share my crush but we did become friends over the years, and eventually dated briefly in high school but by then my crush had faded. Still, I loved the feeling of love.

There’s innocence to what I consider young love to be. It can be unrequited, but still feel intense and all encompassing. It’s almost like your emotions are experimenting with themselves, or working out the kinks, teaching you to understand them.

I wonder what it’s like now for teenagers to crush on one another. From what I can tell from stories my teenage nieces share and from other kids, is that young relationships often take place via texting and social media, and not so much in the realm of spending real time together, getting to know each other. It seems like there’s a bit of disconnect in the way todays youth, well, connects.

I’ve asked Cole if he likes anyone special and he smiles slyly at me. I’m not sure if the sly smile is an “as if I’d tell you, mom” smile, or “why, yes, there is a cute girl in class that I like” smile. My gut is that it’s the former, and I don’t push but I’d love to be privy to his heart. I want him to feel butterflies and excitement and to be tickled when that girl talks to him. Young love is not necessarily the same as the deep, romantic love we hope to share with that special someone as adults, but I do think it’s real and magical and I believe in it.

EVER CHANGING MOODS
March 10, 2015

I know teenage hormones are all over the place. For months we’ve had aggressive, angry teen inhabiting my sweet son. Eye rolling, sneering and an overwhelming desire to be away from his parents as much as possible. Sadly, a lot of the negativity has been directed at my poor husband, likely because he’s the one who is around Cole more during the week and therefore gets the brunt of his frustration that I’m not home as early. It’s disconcerting, but highly typical and seems to be somewhat commonplace amongst our peers.

Thankfully, a corner seems to have been turned this past week. Our boy is back to his sweet self. He’s been more tolerant and gentler of late with consistency. Not sure if it’s the hormones balancing a bit or he’s realized that the negative behavior is unproductive or he’s simply super excited about our upcoming ski trip. They all hold some validity and maybe all contribute to his mood change but honestly, I don’t care why. I’m just relieved to have things calmer and more relaxed within our little nest.

I know the swings will continue for some time while he’s moving through puberty, growing and developing, and I’m content to embrace my darling teen during these moments of calm. Teenage angst is familiar to me and I can cope with the swinging moods but I wish I could bestow my wisdom and experience upon him to help him understand that the aggressive angry behavior isn’t going to get him anywhere but hanging out in his room alone. He doesn’t care that I’ve been there alreadyEVER

IN MY ROOM
January 22, 2015

I came home a little early tonight because my husband had a meeting to attend. Cole usually loves it when I’m home early and we have a “mom-Cole” night. We usually do a little sharing of our days, a quick pass through his school binder, and then we usually settle in and watch a little TV, have dinner together, bath, maybe a little reading and bed. It’s nothing special but it’s just the two of us and we both used to really enjoy the little time together.

Tonight, however, the teenage boy that I now know as my son, preferred to spend the evening in his room. He’d already started his dinner in his room when I got home because he was really hungry, and once my husband took off, I suggested he come hang out with me in the living room. No thanks, mom. I want to stay in my room. The whole time!

I had dinner alone, not sure of what to do with myself. It’s so strange to be home in the house with Cole but not to be in the same room. I know it’s a typical teenage behavior and I am so pleased that he likes hanging out in his room. I’m just not used to it. For thirteen years he’s been unwilling to be alone in a room and now out of nowhere he loves it!

I can certainly get used to this growth. I feel like it’s a positive change for everyone. We enjoyed several dinners in the dining room sans Cole (who was happily hanging out in his room) during the weekend while our friend was visiting, and tonight I did a little guilt free work while I had dinner on my own. I still kind of missed him though…

Cole and I are on our own Saturday and Sunday this weekend…I’m hoping he’ll want to spend some of the home time with me! If not, I’m making some plans of my own…hello facemask and pedicure! Maybe find a movie or two to watch…a little house project I’ve been putting off…quiet dinners with my husband in a candlelit dining room.

I’m starting to see the possibilities of this new routine!

WHEN YOU’RE NEAR ME I HAVE DIFFICULTY
January 3, 2015

Cole is prone to startle triggered seizures, which had him on preventative mediation nearly from birth. There were a few childhood years where he was weaned off the phenobarbital and medication free but a few years ago he had a new kind of seizure that had him still seizing when the paramedics arrived about six minutes after our call to 911. We’d never seen him seize like this and fear got the better of us.

His neurologist put him on a new medication, Levatrice, which seemed to help prevent the seizures entirely, for a while. It seems with the onset of puberty, and the hormonal changes that come with it, as well as general growth, the seizures are back as a regular thing. The school bell, our dog barking, and, more frequently than I like, my voice, when loud, calling from another room are regular triggers for the startle seizures.

Though recently, the seizures seem to have changed somewhat, evolved. The usual manifestation of his seizures involves his body freezing, seizing, with his arms a bit twisted and his face frozen in what looks like terror, and then it’s over. Now once that phase passes, there is an addition of fluttering eyes and mouth for an extended period of a minute more.

The seizures frighten me. I know that they are largely harmless, and that he has little awareness of them occurring, although he does show signs of acknowledgment before they happen sometimes. However, I also know that there have been instances when seizures have been fatal to teens with cerebral palsy. When Cole has a bad seizure, his face goes pale and cold within seconds of its onset. It scares me but I can’t let on him to that anything’s off. I usually try to maintain continuity in whatever was happening before the seizure so when he comes out of it, he’s just where he left off.

We’re again at the point where I think we need to strategize with his neurologist to see if there’s a different medication that can help quell the seizures. I think he’s at the highest end of the recommended dosages for this medication. He’s perhaps outgrown it. I’ve hoped he’d outgrow the seizures entirely, but it seems like he’s instead growing more into them.