OUT ON THE WEEKEND

October 21, 2014 - Leave a Response

My husband is traveling. He’s leaving Cole and I to our own devices for nine days. It’s rare that we two have a weekend on our own. The business travel is usually relegated to just weekdays but this is a long trip so we Cole and I have two full days to cause trouble together.

I’ve worked an adult night out into Friday, much to his delight. His school has an annual Casino Night event and sponsor a big group kid watching in the school auditorium whilst the parents gamble, wine taste and peruse the silent auction goodies at a nearby country club. For some reason I’ve gone by myself for several years now. It always seems to hit when my husband’s traveling. It’s a fun excuse to get dolled up and visit with friends. Fortunately Cole loves the group kid watching scenario so it’s win-win for us. By Friday we’ll be in need of a little break from each other and then we have the whole weekend to play.

He’s already contemplating a list of things he would like to include in the weekend…I’m sure it will change by Saturday morning but as of now he wants to:

• Do some cooking
• Invite Grandma over for lunch or dinner (to indulge in the aforementioned cooking)
• Go to the movies
• Make art
• See friends
• Decorate the porch for Halloween
• Take Luna for walks
• Go to the Farmer’s Market
• Watch a lot of TV (hopefully we’ll avoid this one by checking off all of the other items)

I find his list pretty satisfying. There are a few things I’d like to do as well so we’ll see how they all meld. I love having our special time together, just the two of us. In the chaos of the work/school week, it’s nice to be able to share a weekend with him where we don’t have to do anything, but have the luxury of doing everything.

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TALK TALK

October 13, 2014 - One Response

Having a non-verbal child is a challenge. Especially when they start to lead more independent lives. We rely on word of mouth to piece together his experiences away from us. We rely on our ability to ask the right questions and trust that we’re receiving truthful and factual answers from both Cole and those who are with him. We also have to accept that there is some much we’ll never know about his experiences, his days, or his life away from us. Which if you’re me is no easy feat.

We receive daily notes about his school day. It’s supposed to detail what he’s studying and doing in each class as well as any notable things that happen each day. There’s also space to note which friends he hung out with at lunch, nutrition or in class. The notes are often pretty bleak so we try to fill in the blanks by asking a tired, uninterested child countless questions which largely go unanswered. Occasionally we get a smile here or there, probably remembering something funny he and a friend chatted about or did but not wholly valuable to those who are not in the know.

I am blessed to have some mom friends who have children in his class who share need to know information, but this only goes so far. There’s so much of his school life that remains unknown. I wish I could live in his head to experience life from his perspective and to peek into his thoughts.   Just for a day. Oh, the insight I could gain.

Much of his free time is spent with one or both parents so we have a beat on what’s happening with him during the weeknights and weekends. However, my curiosity roams to the internal thoughts. Not having the ability to have rambling random conversations leaves so much about him a mystery. What does he think about when he’s just relaxing and chilling in the evening? What’s going through his head when he shares a big family dinner with my brother and his family and my mom? What does he really think of my dancing – I know what he thinks of my singing…he’s communicated his distaste for my singing very ably! (I admit, I cannot sing…it doesn’t stop me but alas…I song bird I am not).

Even with the use of his Tobii, a voice output device he manipulates via eye gaze, much of his conversation currently is limited to answering or asking questions not to chatting. Not yet anyway.

 

 

 

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I AM THE DJ (Series – 1)

October 2, 2014 - Leave a Response

Cole really enjoys music. Perhaps better said, Cole really enjoys music when it’s the music he enjoys. This can change on any given day, and when he’s in need of comfort, it reverts to the treasures of his toddler years like Laurie Berkner, Ralph’s World, and god forbid, Songs from the Street (the Street being Sesame). As soon as the weather cools slightly, the favored music becomes holiday music. It can be months of non-stop holiday tunes. There’s diversity in the holiday playlist, which now includes the awesome Bad Religion holiday album and Michael Buble’s too.

When driving alone with me he’s willing to experiment more with what he’ll listen to. He’s a fan of bands like Weezer, Green Day, One Republic, Foster the People, Coldplay, and They Might Be Giants. Keeping his more age appropriate likes in mind, I snap shots of my car radio display when driving so I can introduce him to new songs and artists on the weekends in hope of expanding our somewhat fixed (and often tedious) playlists. I thought I’d share the recent selection and turn it into my first ever recurring topic. Not all of the selections are hits but I’m honing my skills and more are hits than misses, especially if it’s just the two of us! For some reason he tortures his dad with only kiddie music and a strange unwillingness to bend.

If you have any recommendations…I welcome them! So here are the recent tries:

1. Benjamin Booker – Violent Shiver
2. George Ezra – Budapest
3. St. Paul & The Catholics – Call Me
4. Boy & Bear – Southern Sun (loves!)
5. Ben Folds – Song for the Dumped (listened to Ben for an hour!)
6. Nick Waterhouse – Say I Wanna Know (likes the whole album)
7. Andrew McMahon – Cecilla And The Satellite
8. Squeeze – Tempted
9. Lana Del Rey – Young & Beautiful (sometimes)
10. Joe Cuba – Bang Bang

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NO FEELINGS

October 1, 2014 - Leave a Response

Despite that fact that it’s 2014, and we’re no longer living in an era where we hide away children who have disabilities or challenges or are different, I was recently asked by a woman if I thought it was right for me to be taking my beautiful, smart, funny, wheelchair bound son out in public!

It still infuriates me despite having had some time to process it and to calm down. It also deeply saddens me that someone, anyone, takes this view. I try to wrap my head around her intention and while I suspect it comes from ignorance, it also came from a place where she (wrongly) thought she was initiating a protective skew on my exposing my son to scrutiny or judgment.

Part of me worries that there is a populous that will never be comfortable or accepting of people who are different. It’s hard to escape this reality. I’d be lying if I didn’t acknowledge that I see people secretly and not so secretly checking out my son. I see mothers shush their curious children and sweep them past us. When it’s convenient, I gently call them out, inviting the children to say HI or to ask questions.

I’m proud of my son. He’s an amazing kid who has faced challenges all of his life and still manages to lead what most would agree is a pretty normal life. He may do something in his own way, but it’s never stopped him from trying new things or pursuing interest. I want people to understand that just because some is different doesn’t mean that they’re not also very much the same.

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ACCIDENTS WILL HAPPEN

September 30, 2014 - Leave a Response

Yesterday tragedy struck on the playground. Cole accidentally collided with a friend whilst practicing driving the power wheelchair. He’s been really careful, mostly just harming himself, scrapes and bruises from running into benches and things. By all accounts he was moving and she ran up, from out of nowhere, to hug him without realizing he was moving and Wham! Bloody heel…I’m sure tears…

She’s thankfully okay and hopefully more keenly aware to be cautious around moving wheelchairs with newish drivers.

He’s okay too. He was really shaken up, knowing he had hurt his friend, accident or not. Even when the story was recounted to me when I arrived home after work, he was near tears over it. We texted his friend and her mom just to make sure everything was okay to reassure him.

His take away from this is that part of the responsibility of driving a power chair includes not only keeping your eye on where you’re going but being aware of your surroundings. It’s not unlike our own experience driving cars. He now has an understanding that while he can’t control what other people around him are doing, he does need be on the alert. His chair is a heavy, powerful piece of moving machinery that can do harm to him or to others if he’s not super aware of his surroundings, even when he’s driving cautiously.

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Best Thing That Never Happened

September 29, 2014 - Leave a Response

Sitting across from my husband, sharing a meal and uninterrupted conversation is a rarity in our lives.   On those rare date nights, I’m reminded of their impact of them on our marriage. I’ve always understood that marriage, or any valued relationship, takes work. It’s never easy for two people to sustain a relationship of any sort without acceptance, compromise, effort and passion.

Most experts cite scheduling date nights as one of the keys to maintaining a strong marriage, and I completely agree. However, most experts are not discussing marriages where there is a child with special needs involved. It’s not as simple to arrange to nights or days out for that matter.

For us the consideration in childcare is having someone who knows Cole well enough to understand and anticipate his needs. Someone who can lift and transfer him if needed to tend to his needs or to put him to bed. Someone who is comfortable with his g-tube if it’s during a mealtime. And someone who can be engaging with him and who will initiate activities besides just watching television. It’s a tall order, and one that unfortunately no one in our immediate family can accommodate.

He’s grown too big for my mom to lift him so evenings are tough, unless it’s a quick school meeting or something along those lines. Daytime quickies could work if the timing is right. He loves spending time with her but it’s most common that it’s an activity, shopping or taking her to lunch, these days.

We have a couple of people we engage but it’s dependent upon their schedules whether or not it works, and more often than not, it’s for group events or school events. It’s rare that we manage to find ourselves sitting across a table in a low lit restaurant, sipping wine, chatting and laughing…but when we do, it’s impactful. Not having to talk over Cole or the TV, and talking about random things that sometimes, shockingly, have nothing to do with our home life, family, or school, reminds me of our long ago dates.

Despite having been married for nearly fifteen years, these evenings serve to remind me of the times when I was just a girl and he was just boy and we were falling in love. We’re still in love, but there’s something so wonderful about the falling…

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A LITTLE LESS CONVERSATION

September 26, 2014 - Leave a Response

Let me be the first to site my conversational faults. I struggle with not interrupting, especially when I am excited or passionate about a topic. I also get stuck inside myself in thought. My conversational skills took a dive when I was home for many years with my beautiful son, who doesn’t speak. I talked to him incessantly, and to anyone who came into my world during that time…his therapists, my husband, visiting friends…I was so desperate for adult conversation but so out of practice that I often co-opted every dialogue.

I’ve since regained some of the skills but I do still struggle, both with my own faults and with others. Good conversation is truly an art and I have the utmost respect for those who bear the talent and skill to be successful conversationalists.

A successful conversationalist is someone who is who well versed on the topic and who listens as well as they speak. The gift of gab also includes the ability to put others at ease, and to transition from topic to topic. Another key to being successful in conversation is the ability not to be repetitive in your story telling.

I feel like there is a form of disrespect in someone sharing the same story with you multiple times because it says that they weren’t really paying attention to the previous conversation(s). This skill is something that’s only recently become a pet peeve of mine, and I struggle to smile my way through third and fourth telling. I’m forgiving of a second telling, but impatient and uninterested in the third and beyond. I know I’m guilty of this faux pas on occasion but I’m aware of it and strive to make efforts not to perpetuate the behavior (as I do with my interruption problem).

My curiosity is whether there’s a kind, polite way of indicating to someone that this story has been shared with you many times without shaming or embarrassing someone? My interest is not to hurt someone’s feelings but to move a conversation forward. I suspect etiquette would dictate that you simply grin and bear it and then tactfully change the subject when it’s appropriate…

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TEENAGER OF THE YEAR

September 25, 2014 - Leave a Response

Cole’s officially a teenager and I’m not sure exactly what that looks like for him. As exciting as it is and as much as I look forward to all of the teenage angst, it also has me concerned about the changes that come with being a teenager.

I’m afraid that it’s the beginning of a transition that may leave him feeling a bit alienated. I hope I’m wrong…or at least that the teens move slower than I did. In most ways his development is pretty typical, despite the restrictions his body presents him. In other ways, he’s a bit less mature than some, a bit more so than others. Kind of middle of the road on that front! I see his interest in girls starting to pique, and I see his friends on the ebb of their own curiosity about boys and girls.

My concern is that as his friends and peers become more independent, adventurous, and even passionate, he’s going be left behind. He’s got wonderful friends, mostly girls, but some boys. He is adored, but as young romances bud, and independent events become the norm (movies, parties, dinners sans parents), he’s going to be in need of some assistance, and it’s not something that we can rely on friends to be responsible for, but also not times that a parent would be welcome. And how does it work if he wants to date?

Do you find a youthful caregiver who can just sort be there but blend into the scenery? Do you find a willing friend who is trusted and capable? This all falls into the category of things most parents don’t have to think about, and that no one ever tells you might be important…

Categorized in Family Life and Special needs parenting
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You’ve Got a Friend

September 19, 2014 - Leave a Response

I recently joined a mom’s support group for mom’s of special needs kids. Thirteen years in and I have come to realize that this would have been great for me from the get go. I didn’t realize it but having a safe place to share and almost more importantly listen to other women share feelings and thoughts that could come out of my own head on any given day is extremely cathartic. Cathartic in a way that differs from talking to close friends, even close friends who are in similar lives.

The safety of being able to share freely without judgment and simply for myself is liberating. The understanding that I am not alone on those days when I just want to cry and ask the unaskable question WHY? WHY ME? WHY IS THIS MY LIFE? The unspoken words that no respectable parent would utter out loud, but that do live in our heads.

This realization that I am actually a group person is new to me. Very happily. It’s changed my life. It’s incited me to rejoin another support group…weight watchers…the only time I’ve successfully lost weight was during the months that I first attended WW. For whatever reason I stopped, and while I did not regain, I’ve only maintained since I stopped. A feat in itself but I’d like to lose more to for healthy and esteem reasons. I like when people are shocked I’m to learn I’m 50. I’d like it more if I wasn’t fat and 50.

I’ve come to realize the reason I was successful with WW is that I do better knowing I’m not alone. I like having a place to go where no one is going to judge me and where there are room full of people in the same boat who are all there to support one another. Supporting one another is a good thing. It’ a good thing when you’re facing challenges, or not.

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I Melt With You

September 15, 2014 - Leave a Response

I’m a native Southern Californian. I’m an original Valley girl to be exact. I can tolerate heat and I know the ins and outs to getting things accomplished when it’s wickedly hot. However, wickedly hot is the high 90’s to low 100’s. The past days have been over 110 degrees. At some point, the incremental heat increases tenfold! It’s too damn hot. It’s hard not think or talk about anything but the heat.

This past weekend was over 110 degrees outside and the home air-conditioner struggled to maintain the house at even 80 degrees. When it’s this hot there’s little motivation to do much of anything. Although just sitting on upholstered furniture is a sticky affair too. Our comforter is down filled so lying on top of it is miserable because it warms you from underneath. The couches are also down filled so after a little sitting, you’re left with a toasty tush. And forget about the car! Those first minutes are suffocating.

Cole’s chill out chair is anything but chill when the temperature is this hot. It’s covered in an insulated fabric that protects the chair frame from any spills, leaks or otherwise, which is some sort of plastic or similar kind of lining…something that doesn’t breathe. So poor dear ends up with a sweaty back, bum and thighs.

The cat just sleeps, and the dog has wisely discovered the cool hardwood floor right under the air-conditioning vent. Arguably she found the single coolest spot in the house. Cole swam, and soaked in the bath tub until he wrinkled. Mostly we all just melted…

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