May 2, 2016 by Janet Callahan
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March 29, 2016 by Deb - Mom of 3 Girls
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Now that we’re through the mess of a year that was 2015 and Hannah is through with her intensive chemotherapy treatment, we’ve had the chance to focus on some other areas that had gotten largely ignored for a while. One of these is my youngest daughter, Becca.
When Becca was younger, she was a pretty typical toddler and preschooler. She got along well with everyone and we were relieved that she didn’t seem to have the social issues that Abbi had struggled with at that age. However, as Becca has gotten older, we’ve begun to notice some things that she either hasn’t outgrown the way we thought she would, or that are more glaringly obvious when you compare her to other kids her age.
I’d always felt that Becca had some tendencies toward ADD – she finds it almost impossible to sit still unless she’s intensely focused on something, and even when sitting on our laps has always squirmed and wiggled. She is very unorganized and doesn’t pay attention to where she puts things down, so she is constantly losing items and has no idea where. When she was younger, we compensated for this with lots of reminders, labeling items, attaching her mittens to her coat – and I found out when she was in first grade that the bus driver would routinely run her lunch in to the office after Becca had left it on the bus in the mornings.
I also wondered if some of the social issues we noticed with Becca had to do with the fact that she spends a lot of time around Abbi, who we know is somewhere on the Asperger’s/Autism scale, albeit very high-functioning. I figured that Becca was simply picking up social cues from Abbi, but over the past year, we’ve noticed things that go too far beyond what that simple explanation would account for. Now that Becca’s in fourth grade, the gap between where she is at socially compared to the other kids her age is widening.
Last fall, as I was tucking Becca in to bed one night, she began to cry and began telling me that she has no friends, the other kids tease her, and she doesn’t know why. We knew that she doesn’t really have any close friends, but her third grade teacher last year said that she seemed to get along well with all of the kids. This year, that hasn’t been the case. With Hannah and Abbi already in therapy for chemo-related stress and issues (Hannah) and anxiety/panic attacks (Abbi), it wasn’t difficult to add Becca in, and she’s been seeing the therapist every 2 weeks since. She loves the therapist, and especially loves the hour of uninterrupted one-on-one time with an adult where she is the focus of attention. She craves attention, so this is right up her alley. The therapist has been working with her on role playing and trying to work through why she doesn’t seem to fit in with the other kids.
At Becca’s well-child checkup, we also began doing some of the initial screenings for ADD and other things. They referred us to a child psychologist and he had us complete additional screenings. After three visits with me and Becca, plus going through the screenings that Ron and I completed, along with Becca’s teacher, the psychologist feels that there are two things at play, either one or both.
First, she scores high on the autism screening for what used to be called Asperger’s and is now referred to as ‘Mild Autism’. This didn’t surprise me at all – although she does fit some aspects of Asperger’s, others don’t’ seem as close of a fit, especially when you compare her to Abbi. The second thing that the psychologist mentioned is something I’d never heard of before – it’s called NonVerbal Learning Disorder (or NonVerbal Learning Disability), other wise known as NLD.
I was confused at first – NonVerbal? She doesn’t have any trouble talking at all – in fact, sometimes it’s hard to get her to stop talking. But when it was explained to me, it made perfect sense. Kids with this disorder have difficulty in picking up on the nonverbal social cues that most of us take for granted. We can easily tell when someone is joking or being sarcastic or being silly, because we read their nonverbal cues without even realizing it. But a kid with NLD doesn’t know how to interpret those cues. This is why Becca takes everything we say very literally. She also isn’t able to easily take her experiences in one situation and generalize them to know how to behave in a different, but similar situation. This is why new situations make her nervous and why she can’t handle stressful or emotional situations in books and movies easily.
Now that Becca is older, she can see that she’s different – that other kids easily joke and laugh together, while she doesn’t. She knows there are these social cues and rules that she doesn’t understand, but she doesn’t know why she doesn’t understand them, and that makes her anxious and frustrated. At school this year, her teacher has tried putting her in seat groups with just about every combination of other kids but it wasn’t until she let Becca be a ‘loner’ and sit in a desk that’s not grouped with others that Becca has had an easier time at school with no meltdowns. She works better in groups when it’s only part of the time instead of being forced to socialize with other kids all day long.
Academically, she’s doing well, which is a great thing, but we are starting to see her grades fall slightly. Our school doesn’t start using letter grades until fourth grade, so we don’t have previous years to compare her grades to. For the first trimester this year, she got all A’s and A-‘s. The second trimester just ended and she brought home an even mix of A’s and B’s. Still good grades, but we don’t want to see that downward pattern continue. Becca is one of those kids that rushes through her work to get it down and considers ‘done’ good enough, rather than done well. She doesn’t seem to understand what the point is – it’s either ‘done’ or it isn’t. Her thinking is very concrete and black-and-white, with no greys, which is also typical of NLD, I’m discovering.
The traits of a person with NLD are (I’m quoting directly from this page, except for my comments in bold):
- Has trouble recognizing nonverbal cues such as facial expression or body language Yes, this fits Becca very well.
- Shows poor psycho-motor coordination; clumsy; seems to be constantly “getting in the way,” bumping into people and objects I don’t trust her to drink from an uncovered cup at a restaurant still at age 10 – she doesn’t seem to understand where her body is in space or pay attention to what’s around her.
- Using fine motor skills a challenge: tying shoes, writing, using scissors She doesn’t have much of a problem with these, other than that it took her longer than ‘normal’ to master them.
- Needs to verbally label everything that happens to comprehend circumstances, spatial orientation, directional concepts and coordination; often lost or tardy I see some of this in her, but not to a high degree. She does label or ‘correct’ things that she hears someone say that’s incorrect or she wants to make sure they understand what the ‘correct’ thing is. This comes across as being disrespectful to adults or those in authority but it’s more a matter of her need to make sure her world is in order.
- Has difficulty coping with changes in routing and transitions Yes, but not to a high degree
- Has difficulty generalizing previously learned information Yes, very much so
- Has difficulty following multi-step instructions Yes, this has been a struggle since she was small. We have to break everything down into small tasks and be extremely specific. The example that I always give is that I can’t just tell her to ‘go wash your hands’ – I have to not only specify that she needs to use soap, but I have to also tell her to use water too, or she’ll just wipe her hands on the towel and think that’s good enough.
- Make very literal translations Yes. Very specific and literal.
- Asks too many questions, may be repetitive and inappropriately interrupt the flow of a lesson Yes, she doesn’t understand the ‘ebb and flow’ of conversation and interrupts a lot. If she’s thinking or feeling something, she can’t let it go and will ask incessantly or complain over and over, even if there’s nothing we can do right then to fix the situation.
- Imparts the “illusion of competence” because of the student’s strong verbal skills I wouldn’t call her verbal skills ‘strong’ – she does have speech issues as well. And she tends to speak quickly and slur her words together so that she’s difficult to understand. If you’re defining ‘strong’ verbal skills by quantity rather than quality, this fits her to a T.
Essentially, she does well enough to get along ‘well enough’ in most cases, other than socially. I see her with kids her own age at school and at Girls on the Run practice, and she does stand out to me there. She wants to fit in so badly, but just has no idea how.
I see a lot of reading and research in my future – the psychologist gave us a book to get started, and I’ve been looking up information online too. We have one more appointment with the psychologist next week, and he’ll give us his recommendations then. That may include a referral to the hospital’s ASD (autism) program too, for further screening and possible diagnosis there. Many times NLD and autism (of varying degrees) co-exist in the same kid – there are so many similarities between a high-functioning person with autism and one with NLD, which is probably one reason that we see Becca having a lot in common with Abbi, but not fitting exactly quite into that description.
Becca’s 10th birthday was in January. After 2 months of delaying, we finally held her birthday party last weekend. We delayed in part for financial reasons, but more so for the fact that there weren’t any clear cut ideas of who to invite – she really doesn’t have any close friends. We finally ended up inviting one little girl from down the street along with two girls from school (who are in the other fourth grade class, not Becca’s class) and took them to an indoor trampoline park. They jumped and ran and ate pizza and it seemed to go really well, which was awesome to see. Becca had a blast.
Hopefully with all of this testing and determining, we can come up with some strategies and solutions, so that next January there won’t be any question of who to invite to her 11th birthday party.
February 18, 2016 by Deb - Mom of 3 Girls
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It’s been a while, hasn’t it! Since I’ve posted on either of my sites, that is. I last posted on momstakeonthings.com last October and it had been much, much longer ago for this site. I recently decided that I needed to recombine and put everything back into one place. One blog. Just me, writing whatever strikes my fancy.
I decided to go back to my roots, essentially. Back to writing for the joy of it – which is why I started this site in the first place. So it makes sense to bring it all back here. I’ve imported the posts over from momstakeonthings.com – all of the important ones, anyway. I’ve also brought over the knitting-related posts from my short time writing at Just Casting On as well. So yes, everything is all here. I kind of feel like I’m coming home in a way.
I can’t guarantee how much I’ll post – the writing bug has left me over the past few months, but so far this post is flowing well, so we’ll see. My momstakeonthings.com site now forwards directly over here and the email@example.com email is also defunct. You can reach me at debmomof3(at)comast(dot)net.
Yep, it’s good to be home.
December 30, 2015 by Kelli
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The space that was once my therapeutic safe space has turned into a space I look at and occasionally dread. It is an awful feeling when a source of comfort turns into… darkness.
This is my life right now.
I fight for comfort. And yes, Momma still needs a beer, but not necessarily because of my children anymore. BWHAHAHA!! OK… sometimes.
I do have to put a little alcohol on it because of my chronic condition. My cute little tagline has become reality, and whether that’s something you find to be “a problem” or not… it works for me. Not every day. Ok ok… sometimes! Geez. Moderation is everything. But… other than Valium, the pills don’t always work. Also — Botox. I’ve had to undergo surgery 5 times this year for trigger point injections in my pelvic floor, and will be spending New Year’s Eve in the hospital — kids and all! Wheeeeeee!!
Pass the damn alcohol.
Because of my chronic condition without a cure, I’ve had to come to terms with a few things. First of all, find the joy. Find the fucking joy. Where’s the joy? What joy can I find in this shit?!! What CAN I do?!!
Ok: I “get to” watch a hell of a lot of tv in bed. Many people might even consider that a “luxury” — being “stuck” in bed because I can’t sit or stand for long periods of time without excruciating pain. I might have, once upon a time. I don’t as much anymore — but I don’t recall a time in my life when I’ve ever felt “bored” — even now.
I still find ways to be active within my community when I can. Writing, social media marketing, event planning, singing, volunteering, etc. Because, ya know what?! I’m not dead. I can do much of the above from my bed, from my laptop or smart phone, and still do when I can. Want to hire me? Email me — let’s chat. Momma’s got some medical bills to pay. HA!
When I’m not doing much of the above, I’m juggling family life, appreciating my kids’ laughter, music, art, stories, etc. They are my reason for living. Goodness, I’m SO lucky they are good to me. I’m not saying that to brag at ALL. They can be little shits like every kid. But can I freeze them at 7 and 11 please?!!! The sweet things they say and do for me make me burst into tears! Joy.
My friends are also an incredible source of joy. They check in with me and just… get it. They drag me out when I need to. And damn it — I DO need to get out — as much as I’d rather stay home and hide under the covers sometimes, going out for a beer with my friends and feeling like ME again means the world. The hubs doesn’t think I drink nearly enough.
My condition will not define me.
Finally… when I am in the cusp of those lonely isolating moments — I turn to my old pal television. We cut the cable cord earlier this year; I thought it would hurt, but it only brought me closer to my old friend. I’m now commercial free and LOVING it!! TV has always been there for me. As I grew up, I belly-laughed with my dad though Roseanne, Carol Burrnett and SNL sketches.
Today, I nostalgically dive through Saturday Night Live clips with my kids. They have fallen in love with Wayne’s World, Brian Fellow’s Safari Planet, and anything with Jimmy Fallon, Amy Poehler and Tina Fey. This goes beyond SNL to the wonderful world of Parks and Rec, though we haven’t dove into 30 Rock… we’ll get there.
My kids also love to watch The Goldbergs which is nostalgia HEAVEN for an 80s kid like me. If you were born in the 70s and haven’t watched this comedy GOLD… please do yourself a favor and just pick and episode or two and GO. I have yet to watch an episode and think “eh.” I love them all — and it’s hard to find a sitcom I can enjoy WITH my kids. A lot of them can be cheeseball — or just too many sex jokes. Nothing in between. The Goldbergs — somehow — have managed to find that middle ground. Thank you!
For me… having to say goodbye to Parks and Rec and Mad Men this year was a bit painful. They were my friends. Leslie Knope and Ron Swanson? Pals. That Peggy Strut was EVERYTHING. I always felt Joan Harris was my spirit animal — and the episode of The Christmas Waltz will forever make me wonder “what if” for a second between Don Draper and Joan… before I pull back and realize — it’s every platonic friendship I’m grateful for.
This is my life. I haven’t even mentioned how many times I’ve watched episodes of Ab Fab, or… goodness — Gilmore Girls as that IS my go-to comfort food. I am Lorelai Gilmore after-all. Except, instead of coffee… I need beer (or, rather — add beer to my coffee needs) instead of Luke’s, I go to Bob’s more than a gal should. The rest? Fairly spot-on.
I know. I’m insane.
Bare with me, I haven’t written therapeutically for awhile… but really, the places we go to find comfort shouldn’t be judged. Especially if we are suffering in one way or another. What else can we do? If we don’t laugh, we’ll cry. We long for joy and comfort. Nostalgia seems to fit the bill. Look at television these days… even current shows are going BACK to the old days to tap into our nostalgic haze. Many of the shows that I watch don’t take place in present day. When I’m not watching my “present-day” shows like Scandal or Transparent I go to Netflix or Hulu for my commercial free fix of something like… iZombie which is practically a reboot of Veronica Mars! I mean… come on — nostalgia at it’s finest.
The movies have been doing it for years. How many sequels and prequels can one movie have? Look at Star Wars?! JJ Abrams — I love you. You’ve not only reinvigorated a series FROM THE 70s, but you made me want to rewatch Alias! You can’t tell me Rey wasn’t in some way inspired by Sydney Bristow!! GA!!
And look at Lin-Manuel Miranda!! Hamilton!!! I’m obsessed. My daily soak in the tub wouldn’t be complete without reliving the last two decades of the 1700s through a hip-hopera. WHAT?!! Talk about nostalgia. Immigrants: they get the job done. Don’t know what I’m talking about? Download the soundtrack, my friends. Omfg.
My point, and I do have one — is that we all have to find our bliss in some way shape or form. For me — there are days I can’t leave my house because I’m in so much damn pain. It sucks. But I can’t just sit and cry and scream about it. Ok, some days I totally do!! But what the hell good does it do?! I used to feel better writing/venting about it… until the last couple of years — now I can almost count on an inbox full of judgy hater trolls after hitting publish wondering if I’m writing about them, among other choice words. Uh… No? I’m generally venting about… LIFE, people. This used to be my sacred space… doesn’t Tina Fey have a new rule about not apologizing for her jokes? I should look into that.
Because… talk about blowing a funny writing fuse.
The point is… I am writing now. I don’t know if I will continue to write in this space… but I’m writing today. It does feel good to share and spread awareness.
Know that if you are suffering from a mental or physical illness, you are not alone. I am suffering. I may never be cured. I am working on treatments. I am working on getting through each day. I am so grateful for those who talk me through it. Who hug me through it. Who don’t judge me for my genuinely happy posts on social media and just… get me.
I may never be “better.” But I’m trying. I’m still me. I’m powering through the best I can. Embracing the joy… and my beer! This chronic illness doesn’t have a cure, but I refuse to let it define me. And I appreciate those of you who still see the real ME behind the illness more than you could ever possibly know.
October 29, 2015 by Deb - Mom of 3 Girls
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I’m supposed to be happy right now.
After more than nine months of intensive chemotherapy treatments, my 12-year-old daughter is nearly done and the end that had loomed so far ahead as to seem unreachable for so long is finally almost upon us.
I should be ecstatic, jumping for joy, more than ready to resume our ‘normal’ lives again.
So why is it that all I feel lately is numb?
I AM happy – for my daughter, who is kicking cancer to the curb and not looking back. SHE is feeling everything and all of the above that I know I should be as well. And she deserves every moment of joy that the idea of just being a normal almost-teenager brings to her.
And yet, I am exhausted. Physically. Mentally. Emotionally. Spiritually.
I don’t even know if I know how to live a normal life anymore. Is there even a ‘normal’ left once the word cancer worms its way in to your life? The chemo may be almost done, but there’s a lifetime of worry ahead. Maybe someday this will all become commonplace enough that I will find a way to not let it consume me, but now that cancer has struck its way into my family’s heart – twice even – it doesn’t feel like there’s any going back to the anxiety-free, naïve life I lived before.
Hannah has faced cancer two times – and she is incredibly brave, and strong. She is also a pre-teen girl, so there’s no shortage of drama, attitude and eye-rolling as well. She now hates doctors and hospitals with a passion that I can understand, if not endorse. I only hope that someday she’ll be able to reconcile the good they do with the upheaval they have brought into her life.
There is no escape from the fact that for the rest of her (hopefully very long) life, she will always be a cancer survivor. With scans and tests in her future, and the potential for late-term side effects, recurrences, or even a secondary cancer, to emerge at any time.
She and I will both need to learn to live with the newest normal our lives have brought to us. As the parent, my job is to take on all of the worry for her, for as long as I possibly can. I only hope that I am even half as strong as she is, so that I can bear it all for both of us, without breaking.
Even though I already feel broken.
October 5, 2015 by Janet Callahan
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I learned that yet another trach mom I know has to face an unbearable truth: her child died.
Yet again, due to negligence. Or a nursing error. Or whatever nice words the agency and the police plan to use to explain it away.
Always, it's "an accident" and "accidents happen" and they're not really liable for anything that went wrong.
Except, you know, they are. Nurses are licensed professionals. The agency is covered by insurance, and licensed and accredited. They are supposed to be the help that families of complex kids need - it's not like we can take a child with a trach to a mainstream daycare (they'll tell you their license and insurance don't cover that kind of care, and they aren't trained).
And these kids are fragile, and you should have expected that sooner or later, they'd die.
Except, you know, there's dying from their condition, and there's dying from a caregiver choosing to do something that leads to death.
But what you find out over time is that not all of those nurses have as much training on trachs and ventilators and feeding pumps as parents are required to have to take their child home. That their training in meds is not always what you'd hope (like the lady we had who charted that she'd given both an albuterol inhaler, and a nebulizer, in the same 1 hour period). That their understanding of the job is less than you'd expect - like the ones who think working nights means they get to come to work at your house and sleep, instead of monitoring your child while you sleep.
And if you can't trust these professionals who are sent to your home to be helpful, and to care for your child.....who can you trust?
I'm weary. We've been trach free for good for about 15 months now, and I've left most of the groups that are trach related because I can only handle so much drama. But....these things travel back to me, and we're there all over again.
I hug my kids every time it happens. Because what else can you do, other than think "it could have been us."
September 30, 2015 by Candi
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September 29, 2015 by Candi
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September 28, 2015 by Candi
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September 27, 2015 by Candi
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