Archive for the ‘Conversation’ Category

CRUEL TO BE KIND
January 11, 2016

I had a bit of a revelation this past weekend. Perhaps somewhat overdue revelation but I had it (finally) and it’s put me to shame.

A discussion about something Cole related with my husband turned, as it often does, into an argument. I took my frustration out on him and got nasty. It’s my M.O. – not one I’m proud of but it happens a lot when we get into these emotional conversations. I think a lot of people do the same, and it is a learned style of fight that got passed on to my by my mom and brother. Hurt the ones you love.

The revelation I came to, is that my frustration when discussing difficult things in my life, is that we’re discussing difficult things in both of our lives. Shared frustrations, concerns, fears, anxiety, and stresses. When I talked to friends about these things, I have an outside opinion to bounce things off and to bring in different views. When I discuss things with my husband, the frustration is that we’re both in a similar place and it doesn’t help to remove me from where I’m stuck.

I’m not sure if I’m expressing that properly but in my head it makes sense and it struck me that it’s the root of some of the anger I direct at him. He can help me resolve some things because he’s looking for the same resolution, and I can’t necessarily help him. Sometimes you need a trusted or knowledgeable outsider to provide perspective and insight.

While I know that my fighting style is cruel, and not appropriate, especially when aimed at my partner, someone I love, this recognition I had gave me cause to reflect on my misguided anger in a way that I haven’t before. It gave me a deeper awareness of my failing. When I’m hurt, worried, concerned, or even appropriately angry, it’s not useful or helpful to deflect it upon someone else, especially someone who is often sharing the same emotions and therefore doesn’t need the additional burden of my wrath.

We’re going to fight still, everyone does, but I’m really going to make a bigger effort to stop to better understand the whole of a situation and what might really help to resolve it before I lash out.

Maturing can be a real bitch sometimes, especially when the mirror reflection is of someone were not proud to see…

Posted in cerebral palsy, Conversation, Family Life, healing, Life, Love, Marriage, Special needs parenting | Tagged: , , , , , | 2 Comments »

INNOCENT
December 15, 2015

Cole didn’t go to school today. Apparently there was a credible bomb threat in our school district, which caused LAUSD to cancel school for 640,000 students at 7:15 this morning. Insanity.

My instinct is that it was some sort of prank. A New York school district received the same threat during school hours and opted to keep the kids in school. I’m not sure if they have faster sources of verification in place following 911, or why they made the decision but all seems to be well on that end.

Nothing happened here in Los Angeles either. It was likely a distraction of sorts. The logistics of keeping 640,000 kids home are enough to cause some relative chaos in a community. That in itself is problematic, though certainly not life threatening.

Coming on the heels of the San Bernadino tragedy, I don’t think LAUSD had any other option but to pay heed to the threats. They pointed out that they receive daily threats, which are not acted upon, so something must have been more concerning with the threat today.

I can’t fathom who would target schools and children. It breaks all of the ethical rules of war, of humanity. I know terrorism is meant to do so but even terrorists are human, and as we learned from San Bernadino, they sometimes have children.

That level of belief that leads one to take lives in the name of whatever the motivation confounds me. Perhaps I’m naïve, but that means of action does little to earn support or change. In simplest terms, it provokes good to rise over evil. People being shot at a Planned Parenthood doesn’t make us turn and think “Oh, yes, that’s the way to express a point. Now I see what you’re trying to say.” No, that just doesn’t happen.

Having to explain to your child that school is closed because someone made bomb threats at schools is not a conversation 640,000 of us wanted to have today. Our children lost a little of their innocence today.

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

BALL OF CONFUSION
November 18, 2015

This morning Cole had a strange reaction to our discussing two upcoming parties we’ve been invited that somewhat conflict, more like overlap, and as he grew more and more upset, I was both struck by how ridiculous his reaction was and by how poorly my every attempt to calm him down. There’s nothing worse than starting the day off with tears and confusion.

It’s one of those times when I’m reminded of how hard it must be for him not to be able to express himself adequately, and how hard it is for my husband and I to always guess correctly. There’s so much assuming when dealing with Cole and his communication. In the instance this morning, I think he must have misheard, or jumped to a conclusion in what he heard, which upset him, and from that point he was fully committed to his reaction.

Honestly, I cannot imagine not having the ability to talk. I talk to myself. I talk to Cole incessantly – a habit I developed when he was young. I talk. As a kid, my parents joked that if we went on a long road trip, they could literally just sit back and I’d talk continuously throughout the whole journey, however long it may have been, often without noticing that no one else was joining in. My brother would immediately fall asleep, and I rambled.

It pains me to know that more often than I’d like to think, we’re missing the real point of what Cole is feeling, wanting, or trying to communicate. It also saddens me that he cannot always communicate a question to clarify something, or that we cannot adequately suppose that there is a misunderstanding or confusion. Even with the support of his communication device, it can be difficult for him to clarify his understanding or needs.

And of course, I constantly wonder what’s going on that beautiful brain of his. His inability to verbalize or vocalize his thoughts has no bearing on the thoughts running through his head. If I could have a super power, it would be to read minds, more specifically, to read his mind.

 

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

TUESDAY MORNING
May 26, 2015

Back to work following a lovely holiday weekend.   Starting the week on Tuesday often feels harder than on a usual Monday. Having the one extra day of a holiday weekend is just enough to sink one into total relaxation, making the Tuesday start of the week a wee bit jarring.

For half the weekend we were three and the other half just Cole and I. Saturday night we had a delightful date night with a dear friend at a local café doing their first ever “Paella Night”. Seated outside under the glow of the local business signage eating a delicious Spanish meal with yummy vino and great laughter filled conversation. Nothing better.

Sunday Cole just wanted to lounge about in his p.j.’s until close to lunch time. Then we headed off to the last baseball game of his fall season with his friend Charlotte in tow. The game was festive and fun, and Cole and his pal Joshua had quite a cheering section between family and friends, and even a few of the school para-professionals all there to support them. Cole and Char then hung out together for dinner and watched Pitch Perfect to prepare themselves for seeing Pitch Perfect 2 on Monday.

Monday we lazily got ourselves ready for a late morning screening of Pitch Perfect 2. We met up with a few (okay, fifteen or so) friends for movie and lunch and got ourselves home just before four pm. Long fun day with a gaggle of our favorite people.   Leaving us with just a bit of Monday left to have dinner, bath, neglect homework, and snuggle off to bed. Not a bad way to end a weekend.

So now I’m at work and our server is down so I’m unable to actually do any real work. Frightening how lost we are without our internet and server! My goal this week is to regain some consistency with my writing. Turns out it’s like exercise for me. If I get started and stay consistent I’m successful but fall off the routine for more than a couple of days and it’s all over. I really have to work on that with both writing and exercise!

Happy Tuesday…

Posted in cerebral palsy, Conversation, Family Life, Life, Special needs parenting | Tagged: , , , , , | 1 Comment »

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.

Posted in cerebral palsy, Conversation, Family Life, Special needs parenting, Teenage angst | Tagged: , , , , , | Leave a Comment »

TALK TALK
May 4, 2015

I had a realization this past weekend that I’m not entirely proud of but so relieved that I had it. One of those reflective moments where you suddenly realize “Oh, wow”…

My husband was traveling a few days this past week and I handled the driving Cole to and from school duties. I was lamenting the morning drop off because my observation of them was that (besides Cole being terribly embarrassed to have his mom bring him into school – typical teenager!), most of the kids just sort of ignored him as we pass by or settle near his classroom waiting for his para-professional to arrive and take over. It’s like they just don’t see him.

So I was discussing this with some friends over the weekend, expressing that it really saddened me when I realized that Cole sort of ignores everyone else too. He’s not engaging them in conversation or saying “Hi” to any of them despite having the ability to do so with his Tobii. He has a voice that he often neglects to use and conversation is not something that he needs to be dependent upon others to start. In fact, it should be something he’s doing more often. He needs to be engaging his friends with interest and query. It’s not their responsibility to always come to him and ask him questions without reciprocation.

As much as I hate to admit it, but it’s so easy to see your child as the one left out because they’re different, and admittedly it does make it harder for others to engage with him, but the reality is he also has to show he’s open to conversation and interested in others as well. It’s not something we’ve fostered or a skill he’s strongly developed because, cringe, we were focused on why others weren’t engaging him. I’m grateful that light blub turned on and that it’s now something that Cole can work on developing stronger conversational skills and understanding.

I feel like by him initiating conversation or simply greeting friends and teachers when he sees them as opposed to silently rolling by, he will open himself up to more positive and intention interactions with people, and will deepen friendships by actively showing greater interest in his friends. He can’t be reliant on them to be the sole conversant. The reciprocal conversation is so much more satisfying for everyone.

I need to be turning that mirror on my boy and myself a little more often…

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

Next Entries »