Thursday, October 9, 2014

Hypotonia

When we found out LB had Down syndrome, I admittedly had little to no knowledge of this word. I knew that low muscle tone could be an issue but didn't know the word for it. Even as immersed as I tried to become in all things Ds.

So when she was born, I thought the "low tone" they were talking about was how she cried. LOL! I crack up at that thought now. But she didn't cry! She had a yell, almost. It was adorable and yet distinct.

Now that word has become such a large part of our lives that I can't ignore it or laugh it off anymore. Nor did I have any idea the impact it would have on LB's development and life.

When you really think about it, there are so many muscles that you use and you never even think about it.

Since LB has been born, she has the cute little tongue protrusion. Many people commented on it saying she likes her tongue to hang out. But what they don't realize is that it wasn't a willful gesture. It's the lovely Hypotonia.

We see it in all aspects of her life. Mostly, feeding and speech. LB is 3 and has a some handfuls of words that she is able to articulate. Many aren't easy for others to understand yet. I guess this isn't as apparent until you have a younger sibling that is like a little parrot that repeats every word you say.

She's getting much better though and mostly post surgery. I am quite sure her tonsils and adenoids had a great deal to do with her delayed speech in addition to her hearing and need for tubes.

But the hypotonia also has given her a weaker tongue and muscles in her cheeks. If I had one word of advice for any new mom, it would be to learn the exercises and do them religiously! It will make such a difference. I can without doubt say that we NEVER had this taught to us when she was a baby. We didn't even get speech approval until she was much older. This has to start from the early days. Like day 1 or 2! It's CRUCIAL to so many other elements to development.

As a new mom, I didn't know. I wasn't informed. When they ask me how she was eating, I would answer, fine. But now, she is 3 and still can't drink from a straw. She took a bottle and even nursed well. But the concept of a straw or hard sippy cup doesn't work. Let's not even touch on the chewing aspect. That's another nightmare. She is a masher.

Then you have the gross an fine motor that hypotonia affects. This list could get long with all the things it causes, etc. But the one thing Hypotonia does give us, is one HECK of a snuggler!!

Hugs from Bug are just like butta! She melts to you and its the best thing in the world.

Until next time..
Shona

Thursday, October 2, 2014

More alike than different, REALLY though?

What a way to leave my lovely readers hangin, eh?

Let me cut to the chase. LB loves school! Today was actually the first day she said she didn't want to go but then decided to run for the bus. Yes, she takes the bus! I have heard a few comments about her being so small and taking the bus but I think that is the part she likes the most.

I have many things to share about school thus far and will be doing so in the month of October as I also share all things Down syndrome this month. It's time for 31 for 21 people and I am stoked!

However... I may be brief until next week. Just keepin it real here people. You see, I made the mistake, took on the challenge to run this year's Buddy Walk for our local association. At the time that I committed to this great feat, I didn't know Baby B 3 would be arriving shortly after the event. Or that I would be taking on a job, then leaving said job - all in the middle of planning for the event.

Often I have wanted to throw my hands in the air and say it wasn't worth it, but we are 3 days away from the walk and I am starting to feel it all come together. While also still PRAYING it will be a fun day with few hiccups. A few things that make this data junky happy, is the fact that we have doubled what was raised last year and kept the budget MUCH less than what was spent last year too- so I feel good about those stats. We also have 50% more people registered. Those are some pretty good numbers. Now if Mother Nature would cooperate, we will be in a great position to have some very happy kiddos.

So.. back to this Down syndrome thing....

This will be our 4th Buddy Walk. Very exciting considering LB is only 3. (In case you haven't heard of the Buddy Walk, it's a walk that celebrates Down syndrome. HA, easy peasy, hugh? Seriously, there are hundreds all over the world so it's really cool to be a part of something dedicated to such a tiny population in this world.)

K - enough rants... .My point is... each year we do the walk, Jay's school is kind enough to carve out a few hours of their day to host a "Mini Buddy Walk" in honor of LB. It's quite adorable and you may have read about it here a couple years ago. Well they did it again this year and we were beyond grateful for their support.

While walking, one little girl asked me why we were doing this and why we needed money. I can talk to adults easily, give them stats, and ramble a lot of facts about Down syndrome that so many are unaware of. But this little gal caught me off guard to say the least. First, why WERE they giving us money? How do you tell a kid that adults need money to teach people or to have social events? Or to pay for a building... build a website??

The pressure was on and I had only a handful of seconds to make this good.

My response: Well, we are walking in honor of our daughter who has Down syndrome.
Lil Girl: What is Down syndrome?
Me: (thinking that she will have no clue what a chromosome is - she is a 2nd grader- I wasn't sure how to answer her. After the fact, I certainly didn't like my answer either.) I tell her that it is something that might make her different in some ways. Like, the ways she learns, it could even make her walk slower. Then I was lost for words. I had nothing else to offer her.
Her: Oh.

And then she was off to do her own thing and be rid of me.

I dwelled on my answer and hated that I didn't give her facts even if she was younger. I tried to simplify my daughter in a way that made her different when all the while I am constantly trying to force the reasons why she should fit in. But in my head, I NEEDED to explain to this kid - to validate even - why we were all raising money and walking for her. And her having Ds didn't seem like enough of a reason.

After that lil convo, the lil girl kept trying to help LB walk. Because, in her mind, LB was walking slow and needed help. Fair enough. In my mind, walking slower meant that it would take her longer to learn how.

In another instance, I was walking behind LB with Ash and overheard 2 more girls chatting. Then I hear one of them ask - "Which one has Down syndrome?" I was AGAIN caught off guard by these kids. I mean to me, now its obvious. And often, to most adults as well. Yet, these kids didn't see the differences.

I learned a few things that day. One, not everyone sees differences instantly. We are conditioned and learn how to see these things as we grow and gain more life experiences. It's all about knowledge and information that we have in how we respond to these differences.

Two, I think we, as advocates for the Down syndrome community, have an identity issue on our hands. While we want so often to push inclusion and ask that the world see our kids or loved ones as more alike than different, we also want their differences to be what makes them unique and the reasons for the support they are given. Maybe this isn't an 'issue' persay, but it certainly creates some confusion for the lil ones that are just learning about all of these differences and how to treat people.

Three, I REALLY gotta work on my pitch. No need to simplify it, or to justify anything.  Give it to em straight!

Until next time,
Shona




Thursday, August 14, 2014

And so it begins...

Today's the day I've dreaded and anxiously awaited for many moons. LB's biggest milestone to date. Her first IEP. This is the first of many on our public school journey.

I'm actually ok with it so far. We aren't there yet though. I have reviewed most of the report and there isn't too many things about it that are earth shattering. Today well find out  what therapy she will be offered at school, how many days she'll be going etc. Again, nothing  we aren't prepared for. But  something about the report and the regurgitation of what I tell them is what gets me. Same with early intervention. They just go by what you say... It's strange to me.

Side note: I have this odd 'thing' when I'm near a school setting. I cry. Like, tear up in front if people, cry. Not an ugly cry though, thank goodness, but a cry. So there's that. Same with singing happy birthday- even to a stranger, I cry. Weirdo, am I!

Then let's talk about the fact that my baby girl is about to be 3.  Like wow, how did that happen so fast?? That's sure to make me a slobbery mess. Or let's talk about the skills I wish she would've have gained during early intervention... Well that could be a series of posts in themselves- which I will most likely do. Or should I say, the skills I wish I would've known she needed to gain.

Then to add insult to injury... Let's talk about how decisions made in the next few years could affect her future for the rest of her life. No pressure there, right?! Again, another post to come.

All of it has me a hot mess right now. I barely slept last night.  And my head is overflowing  with  thoughts, anxiety and stress. Granted, this is just one of the bigger items occurring in my life right now. I have a bucket full of others that I wouldn't bore anyone with, but some rather large decisions all seem to be coming to a head for me at the same time. This is the recipe for disaster for a person  with anxiety.

So, I shall write my heart out until I feel at ease; maybe go for a walk; I cleaned crevices and window seals yesterday (I'm a stress cleaner in a nesting phase... No, I wont come to your house :)); or I'll just continue to cry., rearrange things and  eat. Sounds about right.







Monday, July 21, 2014

And then there were 200

I wish I would have been as faithful to the writing as I wanted to be. I wish I would have logged all the memories I want to keep and pics to match. I wish I were better at this blogging thing. I wish I was a little bit taller, I wish I was a baller...bahaha.. it's late. Maybe that was only funny to me.

Alas.. I am not. And I am A-OK with that. You see, it just dawned on me that this is the 200th post! WOWZA! That's impressive in itself to me. I mean heck, I never expected that. 12 a year was a stretch in the beginning.

But now I have a lil happiness to write about. Well a lot really. But to share the most exciting first, and to have proof that I did write about it... we are expecting Baby Bolden Girl #3!! Jan. 2nd to be exact. Yes, we are pumped. Yes, I was sad that it wasn't a boy. Not the hubs though. He is happy with all girls.

Funny how you look back on what's different from the first and then the second and now the third. I laughed when we were first planning the room... LB had the Cadillac of cribs or the Benz - I shall say. We held no expense to high and wanted the best. Ash got a Target clearance special (Guess which has turned out to be the better crib?). And this baby... well I thought we were going to have to go dumpster diving for a minute. But luckily found one at a yard sale for $50. LOL!

LB's pregnancy was documented with bump photos, a beautiful scrapbook, pics of everything and posts weekly. Ash barely got her pic taken.. I am already 18 weeks and am just now writing about Baby B 3 Oh yea, who is to yet have a name.

So, what better way to commemorate the 200th post than to celebrate a new baby girl?! At least this should take me into the argument of why she doesn't have a well documented baby book, right?!

I'll share pics soon.. they are downstairs and that is very far for this preggers tired momma. This post alone has worn me out.

Until next time...
Shona

Well this is a good one....

LB kisses the Baby B 3 announcement pic;
Ash is crushed.