I posted earlier this week about an incident that happened while Obi and I were out in the world. If you missed the post, you can read it here. I had interesting responses but the one that has stuck with me the most was a facebook comment saying “he should be fired”.
There was a time when I would have agreed that he should be. But these days I know getting him let go wouldn’t help him in the long run. He’d probably storm home or out with his friends and say that the mom of some “enterdisparagingremarkhere” kid got me canned for like, no good reason, saying I was, like, talking bad about her twerp or something.
He’d maybe get mad and maybe become a little pissed about ‘those people’ or something. He might spend his whole life being a jackass.
I don’t want to see him be fired. I want to see him be better. To learn that the things you say and the way you act means something. They say something about the kind of person you are. And, how you react when someone lets you know what your doing and saying is hurtful? That says a lot about who you want to be.
I’ve found that since Obi’s diagnosis, a number of people have chosen to be better. I know I have. Stickin’ up for people and things that matter to me. Trying to let go of things that don’t really count in the long run. Finding joy in small things. I’ve seen it in other too. People who let me talk their ear off about nothing just ’cause they know I can use a friendly ear right now. People who take a little extra time to ask about Obi and how things are going. People who have banished ‘the R word’ from their vocabulary and their presence.
I’ve met doctors, therapists and program directors who really seem to care about Little Miss, even through they’ve just met. They could just get the job done but they go further.
The listeners and the askers and the language police, they’ve all gotten a little better because of a 28 chromosome deletion.
It’s really quite amazing. Even the heartbreak over the diagnosis I think, in the end, will make me a little better. too.
And jackass. Big mouth jackass. You have a lot of room for improvement. Don’t be mad or resentful or angry or withdrawn. Be more aware of your surroundings. Be mindful of your words. Be a champion for where you work or find new work.
Be a better employee, a better door-opener-for-the-woman-with-the-stroller. Be a better human.
Things happen in life that change you. And you don’t really notice the affect until one day when you find you’re just not the same person you were before.
Today was that day for me. Oh, and it REALLY pissed me off.
Let me explain. It’s fitting that this epiphany happened at Starbucks. I’m a big fan. Mmm, grande awake tea. Anyway, earlier today I headed to ‘bucks, girl in the buggy, trying to get her to nap.
As I was passing through the door, a guy was coming out. He held the door for me and, over my head, finished his conversation with the pair behind the counter. He said “I don’t care who you are. If you have one eye that points this way, and one eye that points that way (complete with hand gestures) that’s CRACK!” and headed out the door.
Old me wouldn’t have thought twice about that remark. But the me I have apparently become was REALLY F%#$ing mad. You see, little miss is currently being followed for potential strabismus (the condition when the eyes don’t look the same way). Not CRACK. A genetic condition. A little something that makes her a little different from everyone else…
and I’m pretty sure whoever he was talking about? Also, NOT CRACK.
I walked up to the counter and before ordering told the Barista that I was very offended by the remarks I caught at the end of their conversation. But the guy was gone. Just some guy. No big deal.
Then, he returned and headed into the back. HE WORKS THERE. Mr. Totally Offended Me works at my fav Starbucks. The Starbucks I go out of my way to frequent because I love that they have an employee with Down’s Syndrome. It’s usually one of the highlights of my day!
By this time a whole bunch of customers had joined the line and I didn’t want to drag all of them into my feud so I left.
Not 5 steps out of the store I realized I was actually really, very angry. This little twerp needs a little reminder that, as an employee, he’s an ambassador of the store and the brand. He shouldn’t be bellowing about a disabled person (customer?) over the heads of other customers. Bad choice. Bad character. Just bad.
And now I need to call the store and talk to the manager and let them know about my experience and speak up. ‘Cause they need to have a little sit down with their staff.
That’s who I am now. Someone who gets mad. Who speaks up. Me – formerly, self absorbed, egotistical, make-a-joke-at-others-expense, foot in the mouth – me.
I’m pretty sure this new (angry) me is not going to change the world. But I can change how many careless remarks are made at my local coffee shop. Or maybe I can’t.
But I don’t have a choice. I gotta try. Cause some day it’ll be my daughter that twerpy jackass is talking about.
…for 7 hours straight. Said no parent. Ever.
I was gonna post a picture of the great castle we built with (for) the boy today. I used to collect them in my younger days – so we were working on a big 800 piece set from my youth. Yep, I was gonna post a pic of the castle except IT’S STILL NOT DONE!
Hub and I switched off on and off building building duty for as long as most people consider a day’s work and didn’t manage to complete the $*#%ing thing.
And we need to wake up in the morning and finish. Because the only thing worse than how we felt about not getting it done was how the boy felt about us not getting it done.
I’ll file this one under “Bright ideas not to be repeated”.
It’s that time of year around here – birthday party season. And while we’re planning our own party for November, the invites are pouring in for classmates parties.
The thing is, we’re now into drop off parties. Which seems to have come along faster than I’d expected, given the boy is still only 3. This causes 2 major problems for me. One, my boy refuses to be dropped off, which makes me the awkward hanging around parent, and two, I’m gonna have to host a ‘drop off’ party. Which, I’m not gonna lie, seems like about 100 times harder to me.
The theme of the boy’s party this year will be Police Party. I’m currently scouring Pinterest for police party ideas. So far, these from Seven Thirty Three are really catching my eye.
I’ll definitely be doing something like this for our gang.
Also, serving coffee and donuts to the grownups who do stay is a no-brainer.
Have any strategies for surviving the drop-off party (either attending or throwing)? I’d love to hear them!
Mommy groups filled with typical mommies caring for typical babies can feel very isolating. I’ve learned when you’re parenting a child with a developmental delay caused by a genetic issue, it’s really hard to relate. In addition to the day-to-day feeling that you can’t keep up with the conversations about what’s happening with the babies that one-by-one pass yours by, there’s the uncertain future that makes you, and others, uncomfortable. For instance, you often hear, I’m letting my baby XXX (co-sleep, have a pacifier, potty-train when ready, skip tummy time) because no one every goes to university (sleeping in their parents bed, with a paci, unpotty trained, unable to push up on their tummy). Which is all well and good…unless you’re uncertain if your child will be capable of going to university at all.
Talk about a mommy-group mega-downer.
But finding other mommies of small kids dealing with genetic issues and resulting delays is a challenge. Until it’s not. This past week, Obi and I started going to a baby group that incorporates typical and special needs kids and their parents. I was a bit nervous walking in last week but I quickly settled in and found some moms that are going through a lot of the same stuff I’ve been dealing with. Finally! Someone who ‘gets’ where Obi and I are at.
Of course, with those who ‘get’ often comes those who should ‘get lost’. There was one more mom sitting in our little circle amid a room full of about 20 parent & baby combos. This woman also had a story. Her first child (not the one in the group) was a micro preemie. He spent weeks and months in the NICU, was touch and go for quite a while and now is “a perfectly healthy and happy 5 year old, reading at a grade 2!!! level”. All this was delivered in a manner that made it sound like her son was now typical and someday ours would be too.
Now I get that she’s been through a lot. Nobody gets out of the NICU unscathed. And it sounds like she had quite a ride. But, there’s a time when you need to find your people. And 3 moms with kids with chromosomal abnormalities all talking about the uncertainties, isolation and fear that comes with this type of diagnosis…we’re not your people. Once you got to the “everything is great and now my kid is 2 years ahead” part you self identified as one of the mom’s who just can’t get what we’re going through in a few minutes on some squishy floor mats at a mom’s group.
I know you don’t mean too, but you kind of make us feel bad. And it seems just a little like you need to try and make us feel better to make yourself feel better. Which also isn’t helping.
I’m all for talking about “motherhood” as a concept. I’m all for hearing about your child’s personality or about how you feel about going back to work. But I don’t want to hear patronizing comments about how Obi will ‘catch up soon.’ I know that sounds bitchy, but I just don’t. Especially when they cut off another mom who has been as desperate to talk to someone else who got a life changing diagnosis as I am.
Stay. Listen. Learn. Smile. Nod. Compliment the cuteness of our kids. But if you can’t keep your awesomeness to yourself, keep moving to the other side of the room where all the kids that are ‘younger than ours but are crawling around like champs’ are playing. Go play my-kid-is-better-than-your-kid with them.
I’ve found my people. And I’d really, really prefer you don’t ruin this for me. For me and my people.
This new ‘subscription box’ craze makes me very happy. But, there are so few that I like that actually ship to Canada. Lucky for me, a local Mom, and I mean really local – like, basically in my neighbourhood – started a fantastic subscription service called MommiesFirst. They ship monthly to expectant mommies and new moms through baby’s first year. I have it on good authority that they’re looking to expand into the toddler years soon. My fingers are crossed that ‘soon’ means January.
Anyhoo, I thought I’d take a stab at creating a video and taped the ‘Unboxing’ of my latest delivery. I’m not great with the camera, a three year old jumping on me and trying to open and describe new things but I think it gives you a pretty honest look at how much fun it is to get one of these.
You can also gift one if you’ve got an expectant Mommie or someone with a new baby in the family on your list. Learn all about it here at http://www.mommiesfirst.com!
My favourite part of the video it that the boy takes a hike as soon as he realizes there aren’t any toys for him in there.
In addition to Obi, we also have Bubble, the 3.75 year old energizer boy (he never stops going). He was taking this definition very seriously as he WOULD NOT STOP WETTING HIS PANTS. Now this isn’t a woeful tale of potty training that just wouldn’t happen. It’s a tale (a wet tale) of ‘I was just to busy to go’, long after the little boy potty had left the building and he became fully capable of going to the bathroom with us or sometimes even on his own (at home of course, I wasn’t sending out into public bathrooms – but when I re-read that it sounded to me like my parenting had reached a brand new low).
All this to the tune of 2, 3, 4 pairs of wet pants every day. Seriously.
So I resorted to bribery. Everyday you have dry pants, you get a sticker. When the page is full, you get to pick out a toy. We called it ‘A big Surprise’ and he def dreamed big. (Think $100 police station play set.)
At first it was slow going. The reward was too far away for his 3 year old self to relate to, so we added a few circles and called them small surprise days. There were still wet pants. There are still wet pants. But those days are now few and far between and I deem the experiment to be a success!
And, what’s more exciting to me is we’ve just put up our new chart – TRY NEW FOODS. Sir picky pants it taking this new chart very seriously and ACTUALLY TRIED THE MACARONI AND CHEESE at school lunch yesterday. Awesome! I’ve been trying to get him to eat it for years! He proudly put his sticker up this morning and is one day closer to the next Big Surprise. (A playmobil fire truck).
Hopefully at the end of this one, we’ll have expanded his possible dinner menu. Right now, there are only about 10 things he’ll eat.
Cross your fingers.
I have been meaning to write a post about steps to take when you first learn about a new diagnosis. I’ve been wading through these deep waters and feel rather hung-out-to-dry when it comes to finding the info you need start helping your little person access the services they need. That’s a long sentence, but not nearly as long as the roundabout route one seems to take when trying to find info about these things.
Today for example, I got a call from one place that offers a certain program telling me that going to a paid program at their center is considered a duplication of service if I’m also receiving home visits from another center (unpaid) and I need to choose which one I want to continue. This after both centers recommended I get on the list for the other program to increase her access to intervention.
Trying to sort all out all the appointments, interventions, programs, services, and therapists is a full time job.
I will be keeping track of everything I learn and will devote a post to my experience. Still, with every province in Canada offering different services, every city having different agencies and who knows what happening in the US, not sure it will be super useful for everyone else.
I think I’m going to pick the Baby Program at the center over the home visits, just to get me out of the house. Fingers crossed it’s the right decision.