Archive for the ‘Teenage angst’ Category

HAPPY
July 17, 2017

Just found this unposted blog…Sort of relates to the one I just posted…

We’re now almost a month in and dare I say, high school is going well.  There were big bumps leading up to the first day, and a small one on the actual first day – the aide who was supposed to ride the bus with him didn’t show up in the morning so he rode alone with the driver until they picked up the next kid.  Apparently, not legal so we made the wrong decision in allowing him to go, but the aide did eventually catch up to him on the route and he arrived safely for his first day.

His schedule got sorted out and he even has a close friend from CHIME in one of his general education classes.  I think it’s helpful because having a typical, cute, volleyball team, girl chatting with you and laughing with you goes along way to inspiring other kids, kids who have not previously attended school with someone like you, to talk to you too.  He’s making friends, slowly, but it’s happening.

School friends…not necessarily the friends you do stuff with on the weekends.  That seems harder to navigate in high school, where parents are interacting in the same way and the community itself if much larger.  At this age, kids generally start to take charge of their social lives so for a kid like Cole, that becomes a bit more challenging without parental support and intervention.  We’ll see.

Overall, the school has shown a great interest in making sure he’s supported, challenged and engaged.  He really likes his main teacher, his special education teacher, who he has for several classes, and the general education teachers likewise are making efforts to ensure that he’s participating and part of their classroom community.  It’s really quite impressive.

All that said, and I’m really not complaining, but it’s still not exactly what was promised.  The LAUSD high school system is very different in terms of how it approaches kids like mine.  Inclusion is not a concept that is implemented at the high school level.  They mainstream, which is more a sink or swim concept, and where I’m thankful he’s at a school where the administration has more than a passing interest in inclusion more so than mainstreaming.

At the end of the day, this month has gone well.  He comes home tired, but happy.  He’s adjusting to the crazy schedule – being picked up at 6:10 am by the bus and returned to our door sometime before 5 pm at the end of each day.  Him happy, it’s all that matters.  The other stuff can work itself out.

 

 

 

 

SPEECHLESS
September 22, 2016

A new television series, a family sitcom, debuted last night on prime time ABC called SPEECHLESS. The show revolves around a family of five, where the eldest son, JJ, has cerebral palsy and depicts the inner workings of this family as they navigate life.

th

I heard about the show early on because someone approached us about having Cole audition for the role of JJ since he’s kind of living that character already and he’s shown interest in performing over the years. After consideration, he decided not to. I think nerves and the start of high school made him think it might be too much, and he’s probably right.

The boy who earned the role is good. He too has cerebral palsy, though I suspect he does actually speak. There are certain truths about the character that wouldn’t be in the show if he actually used a communication device to speak because either he, or his parents, would know better. They wouldn’t be seeking a “voice” for their son. They still would want a wonderfully capable, engaging support for him at school, but not to serve as his “voice”. JJ uses a laser pointer in one scene so I questioned why he would not have a voice output device that operated with a laser pointer, or like Cole, by eye-gaze?

Despite my natural predilection for pointing out the things that I think are wrong with the show, which I know are things that only I would notice or care about (or perhaps other green parents), there are a great many things that are right. I’m thrilled that there’s a family not unlike my own on television. Families of all sorts are now represented on television and finally ours. It’s a huge thing to make something like a kid being in a wheelchair, attending school, and out in the community, a familiar thing.

The value in depicting a family like ours, showing some of the struggles and challenges, but more importantly, the regular life joys and relationships and dreams, is priceless. JJ, like Cole, is a boy who wants to be defined by his interests and abilities, not by his disabilities. He’s a funny, thoughtful typical high school boy, who happens to have cerebral palsy.

The beauty of Speechless is that they do a great job of portraying everyday family life, which in most ways is no different than any other, except that some of the challenges they deal with are a little different. Every family has challenges, all siblings feel neglected at one time or another, all parents fight for what their kids need and all kids are kids, no matter what their diagnoses.

My hope is that by having a family like mine on prime time television being portrayed in an authentic manner, which includes the good, the bad, and the ugly and everything in between, with humor (because who doesn’t find humor in some of the craziness we deal with?), care, and honesty, will make people understand that despite some obvious differences, at the heart, we are all more a like than we are not.

SHOUT
May 18, 2015

A continued frustration in our family is Cole’s unwillingness to step up his communication at home. He’s frequently moody and unhappy about his choices at home either during the early evening hours after school or on weekends when we’re trying to balance getting errands run, taking care of little home projects, homework, and fun. He’s often whiny and angry and rarely willing to take the time to try to communicate exactly what it is that is bothering him.

I understand that running to the grocery store and Target to stock up for the coming week is not the ideal way to spend weekend time for a thirteen year old boy. I do. I also understand that hanging out with your parents may not be the end all be all either. However, whining, teeth grinding, and angry grunts are no picnic either. The fact of the matter is that we’re frequently bound together on the weekends even for the fun activities and when one of us is non-communicative weekends often become unpleasant.

The frustration for Dan and I is that Cole has means to communicate, beyond his ability to convey things without words, he has his Tobii (eye gaze voice output device). Of course, he refuses to use Tobii at home. I don’t know if, by the weekend, he’s just cooked from the effort output all week at school, or if he’s just stubborn. Well, he is stubborn, but I’m not sure about in this circumstance. The trouble is during the weekends, he also boycotts answering questions even those requiring a simple yes or no, two words he’s mastered.

His refusal to communicate makes all of our home time more stressful and anything but relaxing. It makes everything we attempt to do somewhat unpleasant. Even when we successfully do something fun or accomplish an errand without this behavior, it reappears as soon as we leave something and head home. It’s like he hates home, except I know that’s not the reality. I understand he’s sometimes sad that something is over, but it doesn’t warrant the behavior. We try so hard to illicit answers and to try to make things all right, but lately it rarely seems to work.

Nothing is more heartbreaking than seeing your child unhappy, and nothing is more frustrating than seeing that he’s not willing to help himself. His stubbornness and misery get in his way and he just can’t seem to shake it. I don’t know if it’s a teen topsy turvy mood thing or if it’s more endemic than that. I wish he would let us in on the secret. I wish he would trust that if he tried to communicate with us we’d listen.

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