Williams Syndrome Wednesday: Speed bumps

by , on
Oct 23, 2013

It’s amazing how everything can be going along tickety-boo, just racing along  – then wham, you hit something and everything seems to grind to a halt.

I’ve taken to calling these moments speed bumps. The term makes me feel like whatever is tripping me or Obi or life up is just a temporary thing.

Right now with Obi, it’s feeding. Purées don’t really go down unless she’s sucking them off her soother. Munchies like toast sticks and mum mums are heartily stuffed into the mouth, but any attempt at actually swallowing the thoroughly mushed bits that break off a toast stick she’s gumming results in a gag fest and the bits being spit back out.

Sensory? Something physiological? Who knows?

Obi’s been referred for a feeding study to see if they can find an issue or rule anything out. In the meantime, we’re continuing to try and interest her in food and coax some down her throat.

Her other skills have improved rapidly. She’s met all her 8 month milestones but one – both in gross and fine motor skills. With the help of her fab OT she sailed through. But feeding puts us back to the slow crawl of early days.

They were dark days filled with knowing something was up but not knowing what. And a lot of fearing the worst.

My first instinct hasn’t changed much. Now  when I think of all the if/then’s I still start to feel a little panicky. If she doesn’t start eating solids soon, then we’ll need to/she’ll need to…If she has a major sensory issue then…if she has something major like some kind of stenosis that interferes with eating then…

…except I don’t know what any of the ‘then’s’ actually are. Which makes me even more scared.

I had a little moment in the car on Monday, a ‘how are we going to get through this’ tear up moment in which I envisioned all the worst case scenarios when it came to food and eating which made me think of all the appointments which made me think of all work I wasn’t doing as I was rushing off t meet her OT after handing in a permission slip with “unable to volunteer’ checked off for my son’s field trip, which made me think of how I wasn’t able to get groceries as I was late to meet OT, which made me think about her bad eating all over again.

And then I had to pull myself together and think: This is not a crash. Just a speed bump.

If one hits a speed bump then you just work through it and keep moving forward. It’s not a stop sign or even a yield sign. It slows you down then you get going again until the next one.

How many will there be? I have no idea (which also makes me a bit panicky). But I do know, the only thing you can do is tackle them one at time.

At least that’s what I keep telling myself. Just get over one speed bump at a time.

Williams Syndrome Wednesday: A Beautiful Noise

by , on
Oct 16, 2013

Yesterday, I heard the most beautiful sound. Baby Obi giggled for the first time. A true laugh. Not just one sound, but a series of chuckles one after another. It was magnificent.

This social milestone typically occurs between 3-4 months. Obi is 10 months next week. Some milestones are counted by corrected or adjusted age, but I’ve been told the social milestones are often in line with the actual age. Either way, this laugh has been a long time coming.

Her gross and fine motor skills are just a little behind the typical kid, but her eating and social milestones aren’t even close. They are generally taking 2-3 times as long or more than one would expect.

Does that mean it will take her three times as long to adjust properly to solid food? Three times as long to talk? There’s just no way to know.

It’s hard to really embrace the ‘take it one day at a time’ aspect of a complex syndrome such as Williams. All that ‘unknown’ is overwhelming.

But, as many special needs parents who been here before me have said, when the milestones come, they really do make you stop and celebrate.

Today I’d like to forget that ‘one day at a time’ thing and take 2 of yesterday, please.

Williams Syndrome Wednesday – As Long As She’s Healthy

by , on
Oct 9, 2013

I overheard someone talking to a pregnant woman the other day and realized something. I have a little confession to make. I’m carrying around a little guilt. And it’s probably nothing, but it’s weighing on my mind.

I heard the expectant woman say “the phrase.” I’m willing to bet every pregnant person has said it at some time or another. I said it.  I said “We just want a healthy baby.” And, “I don’t care what we get, as long as it’s healthy”.

We all say it – but we don’t really think things will turn out any other way. Do we?

“Hello Guilt? It’s me, Mommy. I take it back. I don’t just want a healthy baby. I want my baby.  And she may not be perfectly, ‘healthy’ but I really do want her anyway. Give me my WILLIAMS SYNDROME baby.”

Yep. We don’t really spend much time thinking about what will happen when baby isn’t the kind of healthy we assumed we’d get. And maybe we should.

I know, nobody wants to scare the fragile pregnant people. But I hazard a guess that if we spent a little more time talking about some of the possibilities that lay on the outskirts of healthy, it would take the tiniest bit of the sting out when it happens.

Maybe the world would be a little less shocked when you mention your child has special needs they’ve never heard of. Maybe people’s faces wouldn’t betray the moment when they think “I’m so glad that’s not my child”. Maybe they’d put away the pity face.

When they see the little pink line, nobody ‘wants’ a non-typical kid. They don’t daydream about a future filled with therapy and feeding struggles, and days at SICK KIDS and worry. No one day dreams about the worry. I get that. I also know that people have them – those non-typical kids. All the time. I have one. And you know what? I love her just the same.

I have learned that I was wrong and I’m sorry. I wish, when asked if I’d like a boy or a girl I’d said “It doesn’t matter” and left it at that. Because I have learned that a lot of things that I thought mattered, just don’t matter at all.

Sure, a whole bunch of things I never daydreamed about now consume the better part of my days. But that warm snuggly feeling I pictured, cuddled up close in the middle of the night? Turns out, I still got that part exactly right.

Williams Syndrome Wednesday: Let’s be better

by , on
Oct 3, 2013

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.

Be better.

Williams Syndrome Wednesday: The Unknown

by , on
Sep 26, 2013

Control. Surrendered.

Expectations. Unrealistic.

Certainty. Uncertain.

Possible. Yes.

Impossible. Yes.

Probable. Not likely.

Likely. Not realistically.

It’s the unknown that makes this journey so challenging. It’s a huge spectrum. There’s no knowing where she’ll sit on it. Though she’s caught up on many milestones, there’s no research that supports this will mean she’ll remain on that curve. She could stall at any time and find herself falling behind again.

Will learning sign language help? Maybe. Will OT ward off physical delays? Perhaps a little. Will the early, consistent exposure to solids help prevent food issues? Could be. Or not.

There’s just no knowing.

And if there’s one thing I hate in this world it’s not knowing.

I realize I need to surrender my need for control and just accept things are just going to be as they are.

I just can’t figure out how to get there from here.

Williams Syndrome Wednesday: Finding ‘our people’

by , on
Sep 19, 2013

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.

Williams Syndrome Wednesday: Sit Up Proud

by , on
Sep 11, 2013

Little Miss sat unsupported for a short time today…maybe 2 min. After spending time with a Mommy group filled with typical children yesterday and having a little boo-hoo over how hard it is to watch all the kiddies moving so quickly through sitting to making moves towards crawling (or already crawling) and now starting to pull themselves up, to say I was delighted was an understatement.

Of course the camera was no where to be found and phone battery was dead, but I’ll snap some pics today if she’s interested in a repeat performance.

As I go through this journey I’m constantly amazed at how I can feel overwhelmed and come down with a bad case of the poor-me’s/poor-her’s and then, the very next day, be so amazed.

It’s a real up and down, one-day-at-a-time thing isn’t it, life.

Today is an up day. Here’s hoping tomorrow will be the same.

Williams Syndrome Wednesday: The Who does What’s?

by , on
Sep 5, 2013

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.

Sheesh.

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.

Williams Syndrome Wednesday (Friday Edition): Running Between the Raindrops

by , on
Aug 24, 2013

Sometimes, when I get asked too many questions or read too many Williams Syndrome sites online, I start feeling overwhelmed by all the ‘what if’s’ and ‘could have’s’ and the unknown. What lies ahead feels like ‘too much’ when confronted with all the possible things that could be an issue as time passes.

I find, at these times, I cope by trying to focus on one little baby thing that Obi is doing that seems like a regular baby thing. I listen to a gurgle. I coax a smile. I watch her pass a toy. I try to forget how late these small moments are compared to typical babies, how few gurgles and smiles I get, how slowly the toy moves. I remove expectations from the equation.

I make myself let it all go and I really really do enjoy the moment.

I’m so grateful for these little flashes. They are so precious to me, more than they were with the boy. With him, I remember the milestones. Smiles, rolling, teeth, sitting, pulling up etc. Each of these ushered in a new phase for him, and for me – new toys, new games, new challenges. New triumphs.

No, for her it’s the quiet ‘nothing’ moments I love. They are boring. Everyday. Typical. They run between the raindrops of her WS. Almost like a barely visible thread that knits all the parts of her that aren’t her diagnosis into a beautiful reminder that she is so much more. And that I, as a parent need to be more than a ‘special needs parent’ and that the world needs to know her as more than a WS child.

Right now, it’s easy. But I’m beginning to understand it will be my job, no matter how the syndrome manifests, to make sure the world continues to see her that way.

 

Williams Syndrome Wednesday: I want to be…

by , on
Aug 15, 2013

A few weekends ago I attended the national conference for Williams Syndrome and they had a talent show for the individuals with WS one night.

There were all kinds of acts, stand up comedy, a family of 3 young children that wrote and performed a song about the loving nature of the WS kid of the family, some “just stand up and sing” acts.

All in all, there were some impressive numbers – these kids were real crowd pleasers – but one in particular stood out to me. A young boy, maybe 5 or 6, stood up and sang “I want to be where the people are” from a certain Dis_ney movie about a little red-haired girl with a tail who lives under the sea. I’m not sure if the rest of the audience had the same gut-wrenching reaction as me – the parent of the youngest diagnosed child at the conference- but I really felt the moment, and still do, weeks later.

If you’re not familiar with the song, it starts out “I want to be where the people are, I want to see, want to see them dancing…” and goes on to, at one point say “Up where they walk, up where they run, up where they stay all day in the sun, wandering free, wish I could be, part of their world.”

Since learning of Obi’s diagnosis and researching WS, one thing that has stood out for me it that individuals with WS understand that they have a syndrome that sets them apart – that they aren’t quite like everyone else. This has made me wonder if Obi will feel ‘different’ as in “we’re all individuals with differences who make up this world” or ‘different’ as in “I’m an outsider and no matter what happens I’ll always be on the outside looking in”.

Hearing this young boy sing (quite well for his age, I might add) about how much he wants to be ‘part of their world’ very nearly broke my heart in half.

I’m willing to bet he doesn’t grasp the meaning of the song at that level. He probably likes the movie, likes the tune. I really hope that’s all it is. I really, really hope, at 6, he’s not already feeling like an outsider. Because if I project that thinking onto my Obi and fast forward 6 short years, that may just be too much for my heart to bear.

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