BD's Annual Post: Family

It’s not often that I get to jump on the blog and say my piece.  Actually, this is the only time each year I jump on the blog to say my piece.  We all know this is not my thing, but every once in a while (Halloween), I get overcome by the blogger spirit.

I love that everyone has a place to learn about our experiences as they are so eloquently expressed by “The Mama”.  This blog has done great things for our family as far as connecting goes. 

While our lives are nowhere near perfect, we still love sharing some of what’s going on with the world.  We’ve connected with and met some fantastic people throughout our time on this journey.  A lot of those folks we met via blogs and the internet. 

There have been times of laughter and times of sadness.  There have been times were we were apprehensive and scared about the future and what lies ahead.  The support from people all around the world is amazing.  It makes us feel as if we always have someone who cares about us and what we are dealing with.  There are people out there going through the same struggles, be it ridiculous amounts of medical appointments, school drama, or just a crazy toddler who likes running into things.

This great Ds community, connected via the internet, has helped us stay on the path, navigate,and continue to push forward when life comes at us hard, as well as when things are going well.  We would be lost without it. 

Everyone has “actual” family and “actual” friends, and our experience and support with them is different based on the history that came well before our entrance into the Ds world.  The added support and knowing that the Ds community all around the world, families like us everywhere,  have our back makes getting out and pushing forward through the challenges of each day so much easier.

So for those that read this blog, thank you for your support.  For those who write their own blogs and share their experiences, thank you for your support.

Just know we’ve got your back too, because to us you all are family.

$21 for 21 Dreams

The International Down Syndrome Coalition has always supported our family, so we have looked forward to the opportunity to do the same for them.

Now is the time. Their current "Grow with Us" campaign is going on now.

I've created a team page and welcome your help to reach the goal.

All donors will be entered in a drawing for a moderately-valued gift card.

Hey. I don't have an income, remember?

While the goal is at least $21 per person, anything helps! Bonus: it's tax-deductible.

I explain it in a lot more detail here: Playette's Peeps

Won't you accept this challenge?

Scarlet Fever

I woke up this morning with every intention to send Playette to school today. She seemed like she was on the mend yesterday.

Instead, I took one look at her and it was a quick decision to take her to the ER. Her regular doctor's office didn't open until 10 today and her appearance scared the crap out of me. Her face was swollen and red, her eyes almost shut. She complained of pain and her trunk had a rash that was spreading.

I think there are a couple of reasons I'm so hypervigilant when it comes to her health.

1. She just doesn't get sick very often, so I don't have a lot of experience in this area. 

2. Ever since she was born, I've been waiting for the other shoe to drop regarding her health issues. Even though I thought it was probably scarlet fever, part of me was extremely scared that it was something else. Something much worse.

On top of that, scarlet fever just sounds ridiculously super scary to me because that's what Mary Ingalls had, or maybe not, but I digress.

Our hospital has a separate pediatric ER and I figured there wouldn't be much of a wait. Also, with the choice of taking her there or taking her to urgent care, for us there is no price differential to consider. So I figured I'd take her to the place that would most likely be a one-stop shop.

Remember, I was thinking the worst.

Her spirits were good though, so that helped to keep me from breaking all the way down.

I'm not going to show you a picture of what her face looks like, because I wouldn't want her posting one of me if the tables were turned. As if to let me know her own desires, this is what happened one of the times I tried to take her picture in the exam room.

Her throat was swabbed because the doctor agreed with my diagnosis. We both had our fingers crossed that it would come back positive for strep.

Playette handled that stick to the back of the throat about 100 times better than I ever have.

While we waited for the results, Playette entertained herself by watching our family picture slideshow over and over again. 

BD arrived and kept Dez occupied, thankfully. 

The test came back positive. She immediately got a dose of antibiotics and Motrin, we were given a prescription and headed home.

It looks like we are going to be spending some quality time together today and tomorrow, at a minimum.

Hopefully, she'll be back on her feet and no longer contagious by Halloween.  

In the interim, I am getting more than my fill of Nick Jr.

If only amoxicillin made her sleepy...

"A Special Trip"

That's what I told Playette we were going on today. She was home from school because she still wasn't feeling well and I had a mission that had already been planned. I decided to allow it to be a surprise. She was very into it and wanted to pack a suitcase. 

It wasn't that kind of trip though.

When we lived in Virginia Beach, we made friends with a family that had quite a bit in common with ours. They lived only a couple of minutes away, both of us are Navy families, and we each had one child with Down syndrome. We even shared therapists.

The kids got along famously. I've written about how Playette used to call her friend "Pillow" because she couldn't pronounce his name. 

When it was time for us to move, it was a difficult transition.

As recently as Friday, Playette was asking about him. She does that often. She really misses him and will even call other boys by his name.

Before we did move, we added Dez to our family. And then this spring, their family added a new son as well.

As a matter of fact, a couple of other mamas who also had only children welcomed boys to their families as well. Must've been something in the water down there. It's nice that we can share this new experience together, even if only virtually. It is hugely different having a typically-developing child after your first child has Down syndrome.

So, while talking to my friend a while back, I realized that I could very easily pass along baby clothes to her as Dez outgrew them. The only problem was that we no longer lived anywhere near one another and the amount of clothing was growing by the week.

Since she was visiting family about two hours away from where we live now, we decided to meet in the middle to do the exchange today. While it wasn't part of the original plan to bring Playette, I was really glad that she'd be able to participate after all. 

All I needed to do was make it across a bridge that scares the everloving crap out of me. Twice.

I did it. Twice. 

That's how you know these folks are special.

It took the kids a little time to warm up to each other again, but it went well. We sat at a rest stop picnic table and the kids shared snacks while the mamas talked. 

I needed that. 

And they're just too cute together. 

Doesn't he look like a mack?!

The whole gang.

Final Stretch

I can't believe it's already the 27th. 

Usually, by this time in 31 for 21, I would have posted at least once about not having any ideas or would have been asking for suggestions.

I don't know if it's different this year because life is so crazy or what. It feels like I've just had plenty of things to talk about. Or, maybe I'm just a lot more relaxed about sharing what's on my heart?

Nothing earth-shattering to report tonight. We stayed busy this weekend, as usual. Friday, BD and I went to a social meeting hosted by our homeowners association. 

Saturday morning, Playette had cheerleading practice and I went on my first long run in quite some time. After those two activities were completed, we all piled in the car and went to a college football game. The kids had a great time tailgating. Dez was not happy being confined to a seat, so after the first half I just walked circles with him around the stadium, hoping he would eventually fall asleep.

He didn't, but no worries. It was still a nice afternoon.

Playette, on the other hand, did fall asleep at the tailgate party and we recognized that something must be amiss so we came home shortly thereafter.

She went right to bed, but gave us a courtesy call at 2 AM, letting us know that we had some cleanup work to do. She hardly ever gets sick, so it's hard to complain.

This morning, our wonderful sitter came over so that BD and I could go cheer for the Marine Corps Marathon participants. I had a great time and was happy to be able to be there for some people I know personally, in addition to approximately 30,000 strangers. The energy was amazing and I may have shed a few tears.

I was super excited for them all, but I still don't want to run a marathon.

Speaking of running, I've been doing okay lately. I haven't stayed as consistent as I would like, but I am making improvements along the way. I have a 5K coming up on November 2 and a 10K on November 9. That will do it for 2013 for me. It's already time to start planning for next year.

Tomorrow, I'm hoping to get the chance to set up a team for the IDSC Grow With Us Campaign. When I'm done, I will post a link here so you can read more about it.

I cannot thank you all enough for following along on this journey. I know sometimes I'm quiet, and other times I'm boring, but I appreciate each and every one of you and your support. 

I'm tired, so now that the kids are in their beds and no one is screaming, I think I'll crack open one of our 96 treasure chest beers and hang on the couch with BD for a bit.

Until tomorrow…

The Fam Bam

This made me smile...and cackle.

I hope you enjoy.

The Smith-Smith Family Photo Shoot, 2013

Courtesy of The Captured Life Photography

Update

So, about today's meeting...

Good tissues! 

But, thankfully, I didn't need them.

I'd like to, again, thank everyone who offered advice and a virtual shoulder to lean on. I went in with a sense of confidence, ready to listen objectively to what was going to be said. I was prepared in my mind to not replace anything I knew to be true about my daughter with a label or a percentage.

In a nutshell, it went about as well as it possibly could have. 

Within the Individuals with Disabilities Education Act (IDEA), there are a thirteen categories under which a student can qualify for special education services. For the purpose of this discussion, I will use the word "label" when referencing the category.

I was fighting against the "Intellectual Disability" label prior to the testing because I didn't want it to possibly pigeonhole Playette in the future (some people form an opinion of a person upon seeing that label and can't move past it, impacting placement, level of support, expectations, etc). 

I had suggested "Other Health Impairment" or "Speech or Language Impairment" but the rest of the team wasn't convinced.

As it turns out, based on Playette's scores, the ID label isn't the the most accurate option after all. It's not clear which one best relates to her situation and that doesn't surprise me a bit, knowing my kid the way I do.

We will discuss further and decide on the most appropriate label at the next IEP meeting in two weeks. 

Seems like a lot of time and effort for a label. The services won't change. She's still the same kid. And I hate the whole label deal, regardless. But I kinda get it.

I do feel like I'm missing something though. Is the label just a means to an end? Label drives funding, right? If so, what difference does it make which one it is? Does one label secure more funding than another?

It feels like every time one question gets answered, so many more pop up.

What's the worst that could happen?

I am just a glutton for punishment.

Against my better judgment, I consented to having Playette submitted to cognitive testing.

For years, I always felt like I would, and should, give an emphatic "no!" when asked.

And then I caved. 

In our last meeting, I was convinced by the team that everything would be fine. It was simply her time to be evaluated and I also recognized that in this state to avoid doing so would mean going through a lot of hoops. And fighting.

I'm just not of the mindset to fight right now.

So, I said yes. 

I came home and filled out my part. One online assessment tool and another paper packet that seemed ridiculously obsolete and irrelevant.

Before I get myself all riled up, the point of this post is to share that tomorrow morning I'm going to meet with the school psychologist and learn the results.

Needless to say, I'm not looking forward to it.

I'm not used to asking for help,

but tonight I am. I need coping techniques. I need to know what to do when faced with scores on a paper that try to tell me all my daughter isn't when I know in my heart all that she is.

Do I cry or do I remain stoic?

Do I try to make a joke out of it or do I sit quietly?

I'm guessing that running from the room screaming is out of the question.

I hate this part. 

And then there's the feeling that I brought it all on myself. I could've bucked up and said no, but I didn't. And now it's too late and whatever those tests concluded will be in her file forever. This will be the first thing that many people learn about her and base decisions and placement on (even through they shouldn't).

Oh, what a pessimist I am, huh?

For all anyone knows, she may be eligible for Mensa.

Oh, God.

That psychologist better have some good tissues in her office. I'm talking extra soft with lotion and everything.

At least that way everything doesn't have to hurt.

Love Notes

Playette loves a good note. 

When I put one in her lunchbox as a surprise, she gets very excited when she finds it. She watches me intently when I write notes to her teacher every Tuesday regarding her need for a change in dismissal routine. Her eyes light up when BD leaves her a message on the easel in the kitchen.

When I need just a little break for clarity's sake and I tell her to sit down with her magna doodle, she immediately will start to write "notes" to all kinds of people, for all kinds of reasons. These are not particularly easy to discern. She knows what they say though.

This morning, I came downstairs expecting to find her in her usual seat at the counter in the kitchen where BD typically sets her up with a bowl of cereal or oatmeal before he leaves for work. 

My heart stopped for a moment when she wasn't there. I called her name and she answered, but I couldn't see her. I was very confused for a few seconds and then I realized where she was.

I found her seated on the floor on the other side of the island from where I had been standing. She was quiet and there didn't look to be any chaos or broken items, so I began to relax.

But then I noticed what she had: a pen. Oh, no.

The panic returned. What did she write on?

She proudly held out to me the answer to my question. It was a very small spiral notebook with a purple plastic cover. I recognized it because for the last couple of months I've been using it to record everything I eat. (That's a whole story in itself that maybe I will share later.)

"No big deal," I thought. Whatever she wrote really couldn't have hurt anything. I felt grateful that the only damage was contained in a $0.99 item purchased from CVS.

As I began to take out the items I needed for breakfast and her lunch, I casually flipped through the notebook. I had to laugh.

First, she tagged it. She wrote her name and she wrote the word "Book." I've never seen her write like this before - y'know, spontaneously and appropriately. Usually, she'll just write what one of us dictates. I was actually really happy! 

This is so her though. She is extremely territorial, even with stuff that doesn't actually belong to her.

This next one was pretty cute because when she says that she loves me she says it like "I love-a you."

So, either she's writing it the way she hears it or what looks like an "a" is actually a "u".

Maybe I will ask her to read it to me tomorrow and see what she says.

Either way, I love-a it.

The Tea Party

This post is not at all about politics.

No, wait. Maybe a little. But not in the way that you may be thinking.

Since first grade started a couple of months ago, we have been dealing with Playette exhibiting some undesirable behaviors at school.

She wasn't doing anything horrible, but our situation lends itself to a certain level of anxiety for people like me, even when she does things that aren't all of that different from the average student. 

I've seen and heard other parents of children who have special needs and are fully included share similar feelings. 

I know it's not supposed to be like this, but it's like we are waiting for someone to say that our children don't belong there, that they have done something that prevents them from continuing to earn that seat in the classroom, accessing the general education curriculum.

I would sit at home the last couple of months and wait for the phone call that requested a meeting or an email that said this placement was just not going to work anymore. 

It happens, y'all. It happens all the time. It shouldn't, but it does. And all of us who live in the world of IEPs are aware of it. So we wonder and we worry and maybe we also put unrealistic expectations out there for our children, hoping that they will prove to everyone just how wrong they really are.

The fact remains that our kids are sometimes judged unfairly. They are overly scrutinized. They are held to different standards simply because they are not average. 

This topic reminds me of a presentation that I saw over the summer at the last NDSC convention. The session was called "Doing the Detective Work to Create Positive Behavior Change" and it was led by Mr. Scott Shepherd. The following slides truly resonated with me.

This was exactly it. I had never seen it put quite this way before and unfortunately this is the approach that many people take when it comes to interacting with people with special needs. There's this cloak of pessimism that is draped over every action. 

So, with all this in mind, I was scared. I was nervous about what that would it would mean for Playette if we couldn't get to the root of her issues. 

I womaned up and crawled out of my proverbial hidey-hole and initiated some conversations. Some modifications were made. Accommodations were put in place. And then it hit me. What was it that she really wanted? What could we use as an incentive?

A tea party.

And you know what? It's working. For the past two weeks, she has had more good days then not-so-good days. She is earning all kinds of cute and fanciful stickers. I have every book in our library system that even references tea parties either in our house or on hold. I have supplies waiting to be turned into a large poster where all of her daily awards can be displayed.

I never in my life thought I would be bribing my child. So, instead I will call it "positive behavior reinforcement."

Ah, that feels better.

I'm not sure when or where this party will be. I guess I need to get on the ball with making an actual plan. At some point, she's going to get tired of the stickers and want something to actually take place.

I am not a crafty mom or a girly-girl, so this is going to really be outside of my comfort zone.

But, hey, what else is new?

Space

I try to give Playette opportunities to make good decisions. Sometimes it works, sometimes she shows me that she still needs me to stay close by.

And then there are other days that she shows me that something she can typically do on her own, all of the sudden she doesn't feel like doing. I try my hardest to chalk that up to her simply being a six-year-old child. I shouldn't take it to heart.

She'd rather play than get dressed. She'd rather use the iPad than find her shoes. She wanted to wear a coat that just isn't necessary today.

Those examples are just a glimpse into our morning.

I was frustrated, to say the least. Trying to manage all of the logistics that go into successfully getting her to school each day can be difficult. And then you add in a very demanding toddler. Things can get hectic at times.

The thing is, though, I know she's capable. I know that so many things that are going on right now are due to jealousy and seeking attention, which is typical with a relatively new sibling, especially after having us to herself for so long. 

It's just a phase, but it's taking longer to resolve than I had anticipated.

Sometimes I need a "woo-sah" moment, a chance to exhale and put it all into perspective.

So I gave myself that today. And her as well. A chance to work on building confidence...for both of us.

She walked herself to the bus, looked back to wave, and was on her way.

That felt good.

Harvesting

Does anyone else follow Oprah on Instagram like I do? When she's not busy going on safari or hanging with celebs, she's harvesting her bountiful crops of fruits and vegetables. I'm so ridiculously jealous. The money I would save in avocados alone!

We have tried out hand at gardening. I guess if I'm being honest, I should say that BD does most of the actual work and I just say what I want to eventually come out of the ground. I'm also semi-helpful at pulling weeds and being a decent companion on nursery trips. 

So far, we've gotten that one big sunflower I mentioned, a ton of mint, a handful of lettuce, a dinner's worth of string beans and...

 

Carrots! Today we got carrots! 

Excuse me while I go invite Ms. Winfrey over for brunch. 

Think I won't?!

That reminds me, I've been posting photos more frequently lately because BD told me that he likes the way it comes up in his reader when I do. That's obviously a huge priority for me. (snort)

If you're interested in seeing pics after this month, I'd recommend following me on IG. That's usually where I post things these days. It's a private page, so try and give me a clue who you are if you're game.

My handle is the first part of my email address, as seen in the sidebar on the right. Six letters.

Better than Christmas

I love today. 

IT'S FAMILY PICTURE DAY!

Anyone who has ever been to our house can tell you, I love and appreciate great photography and I'm fortunate to have some very talented friends who enable me.

We have just one picture on our Wall o' Faces of the four of us. It was taken at the NDSC Convention in 2012 and Dez is tucked into his sling, his three-month-old face barely visible.

Very soon, that will change and I'm excited for the new images. 

Here's a peek. BD took this one after we were done and about to pile into the car.

Next up: pretzel dogs! 

Best. Saturday. Ever.

Paying It Forward

Every time I think something I feel like sharing doesn't have anything to do with Down syndrome, turns out it kind it does.

It's not like I'm thinking about the extra chromosome all the time, it's just that we've made so many connections that Ds is just kind of part of who we are now. It encompasses our friendships and our activities. Things like that. Not like a cloak, but more like a sheer overlay.

Today, I was thinking about how my children just don't seem to be getting along as often as I would like. Dez is fiercely independent as is his big sister, and they just seem to want the same things at the same time.

One thing that they share is their love of all things Signing Time.

Playette didn't experience Baby SigningTime  because we didn't know about it back then. We watched what was on PBS at the time and we ran with it. So, once Dez got to the point of being able to learn ASL, we exposed them both to the series. Playette also took it upon herself to teach her brother some very useful signs. I'm shocked by how many he knows now. It's really cool to see how excited he is with his newfound knowledge. 

Would we, as a family, know ASL, if it were not for Playette's diagnosis and, with it, a strong possibility of a speech delay? Possibly not.

Bless Rachel and her two little taped up hands.

She has given this mama the gift of Exhale.

They actually look like civilized citizens in that picture. That says a lot.

"Nafer"

I'm not quite done with speech yet. Please bear with me.

So, you know how I have been stressing lately about my child's challenge with articulation? Well, right after pouring my heart out for two days in a row about it, this happened…

It was early in the morning and I was getting the children ready for the day. Playette was and Dez's room with him while I stepped out to grab something from her room. They were looking out of the window at our neighbor's house across the street. The neighbors were getting some work done so there was a really tall ladder in their driveway.

My children were oblivious to the fact that they could not be seen or heard three stories up. So what did I hear Playette say? 

"Hi, nafer! (pause) Neigh. Bor. Neighbor."

She didn't know that I heard her.

This is huge, y'all. This means that she's paying attention. I always knew that she tries so hard, but this was just what I needed to remind me of how capable she really is in this area. It's all in her own timing, but she's taking it all in, processing it, and making progress.

Usually, when she addresses or refers to the neighbors when we're outside she says "nafer." I stop and gently correct her and break the word down. 

I know that she knows the sound that a horse makes, so I ask her and she says "neigh." 

I know that she knows the proper reaction to cold temperatures, so I ask her and she says "brr."

I ask her to put those two sounds together and she says..."nafer."

This has been going on for quite some time. But, in every instance, we repeat the same dialogue. 

This time though, she got it. There was no pressure, no fear of disappointing anyone. Maybe that's the key? I don't know. 

Does she speak clearly when no one is around? 

If a tree falls in the woods...

I know the words are in there. It just takes more effort on her part. And so many times, she's so excited about what she has to say, that she doesn't slow down and take the time to parcel out her phrases. It's a difficult lesson to learn…for both of us, I think.

So when I heard that wonderful word, "neighbor," I ran into her room, picked her up, and swung her around. I gave her hugs, kisses, and high-fives. I celebrated like it was every holiday rolled into one.

You'd think that after six years that I would get it. That I wouldn't stress out, or cry, or worry so much. You'd think that I would know to just be patient and allow that amazing feeling to happen when it all just clicks.

Because it does happen. 

I'll keep trying. 

I'm not there yet, but I want to be.

Time Flies

It seems like yesterday that Playette was an only child and I would wonder what her life with a sibling could be like. We had nearly five years as a family of three.

And then there he was. Late, big, loud. All things that were new and different. Exciting and intimidating.

He challenges me. He scares me. He surprises me. He loves me. (He told me so!)

This whole raising a child who lacks a diagnosis? Mind boggling. I have so many things to say about it, but then I wonder if only parents who first had an only child with Ds will be able to relate. 

It's different. Not better or worse, but so entirely not the same.

I often wonder if it is girl/boy, first/second, M/D, 47/46...

Who knows.

They're unique, obviously.

This second born boy of mine named Dez with 46 chromosomes has been rocking our world for 18 months now. 

Wow. Just wow.

Love him.

Recap

I thought about skipping writing anything personal tonight. I'm just not in the best of moods. I'm tired and completely at a loss over how to do better when it comes to my daughter. I keep coming up with things I could've done differently. I feel like I'm not equipped to protect her.

That's a pretty crappy feeling.

Anyway. 

Yesterday, while I had BD home for the holiday, we attacked our storage closet. We've lived here for a little over a year and unpacked about 90% of our belongings within the first 30 days, but that last 10%...well, it was behind a closed door, so we left it there.

It felt good to be productive. I still have some sorting and placing to do, but the bulk of the work is taken care of. I'm excited to have a place to put my stockpile. I've been taking on couponing again as a hobby lately. I probably need to get out more, but this is my version of fun. Plus, I love to save money. Double bonus.

Playette had an early dismissal day, so we went and picked her up and drove to the ENT. The doctor was really nice and spent a ton of time with us. It was a tight space with a lot of people in it. The four of us, the doctor, her PA, and a medical student from NYU. I asked lots of questions and she gave us lots of options.

We've always been very fortunate with Playette's health. She hasn't had even a small procedure done. She doesn't have many of the medical issues that are typically associated with Down syndrome. 

This is great, of course, but it does make things slightly difficult when it comes time to address what her challenges are. For example, with this speech delay of hers, a lot of people see improvement in that area once the child has had ear tubes inserted. But she's never needed them.

Next up, what about tonsils and adenoids? It's pretty common to have those removed. That could decrease congestion, amongst other things.

Again, not her issue. Nor is sleep apnea. Or reflux. Or a multitude of other things that are really common and have relatively straightforward courses of treatment in a lot of cases.

So what is it? Why has she not outgrown her aspiration?

The latest thought is that she may have a laryngeal cleft. When we spoke to the doctor about how this could be confirmed and then treated, we were told that it is a multi-step process and it may not even end up being what she needs.

At the end of the day, thickening liquid is not that bad. After four years, we're old pros. So we will just sit back and observe and if there's ever another, more pressing reason to have her go under anesthesia, then we can consider also taking a look at the anatomy of her throat at that time.

Fun stuff, right?

Imagine having this conversation while Dez is also in the closet-sized room screaming his head off because we (gasp!) won't let him repeatedly throw BD's phone in the trash.

Playette handled the appointment like a champ. She earned a sticker and was quite happy even though Ariel was not her first choice. Once I started singing "Under the Sea," she became instantly content. It's the least I could do.

And because on Saturday night, we couldn't find a picture between us of both of our kids standing side-by-side, I was happy to catch them doing so today. 

Happy mid-month to you:

Misunderstood

Speech. It's a biggie for me. It's such a divider amongst children, which is becoming more and more apparent to me.

Some kids don't want to play with my daughter because they can't understand her. Her receptive language skills are just fine, but she is challenged by articulation. She has so much to say, but it doesn't come out in a clear manner. It's jumbled and slurred - jargon - mixed in with a sprinkle of words that just happen to be really clear. If you know sign language, sometimes you can put together the context clues.

She gets speech services in school and we also pay for private therapy. Her struggles aren't due to lack of effort.

There are kids that don't care and they include her, which is nice. I'm very grateful for them. 

But when she gets run away from or ignored by other children or keeps trying when they don't want her around...it just breaks my heart.

I don't know how to handle it. I can't be there all the time to act as facilitator.

One day she's going to notice and it'll break her heart, too. 

Party! Party!

Today, we kept the keepin' busy trend going. We packed up the family in the car and headed right back into the big city for a fun-filled day with friends.

The first stop was the birthday party of one of our favorite nearly-five-year-olds. He asked for a bowling party and his parents made it happen, much to Playette's delight. The alley was amazingly old-school in nature. Simple in all the best ways that sometimes get overlooked in our Quicker! Faster! Better! society. I really enjoyed seeing the kids be kids. My children had a ball. 

Or in the case of Playette, she had about 100 balls...all going down the lane at once.  

When all the cake and other goodies had been consumed, and after all the prizes had been one, we said our goodbyes and ventured forth to our next destination.

I'm making it sound like we were battling dysentery in a covered wagon. Manifest Destiny! 

I've never denied having a flair for the dramatic.

A few weeks ago, at my 15 year college reunion (I know, I know - How is that possible? I'm so young!), a group of us chatted about getting together more often than every half-decade since we're all living relatively close to one another right now. 

Six adults, thirteen children, and a bushel of crabs later, it was a reality. We had a wonderful time catching up and I loved seeing everyone's children and having my kids play with their kids. It was very surreal since my classmates and I were all still kids ourselves when we first met. 

My kids were exhausted and were put right to bed when we got home. BD and I are spent. But it was all well worth it. I love when we can get out and be with people whose company we enjoy.

We probably should have just rented a room in the big city since we're going back again tomorrow for an ENT appointment for the bigger little one. 

Time to get some rest.

Date Night

BD and I spent this evening at a fundraiser for the Ds support group in a nearby city.

It was great to get out and relax and only have to cut meat that I would be eating. I also showered before we left the house. Bonus!

There was plenty of food, drinks, music, games, and prizes. Plus, we got to laugh with friends and meet great new people. 

I also was fortunate to learn that for the purpose of bidding on silent auction items, my limit is something less than two Moscatos. 

I'm a lightweight these days. 

We are now the proud owners of a treasure chest full of beer and four loaves of Stromboli.

And I may have also won a bottle of wine and a "coin-counting money jar."

We are loaded down with swag.

All for a good cause.

Mini Yogi

I signed Playette up for an eight week after-school yoga program. I thought some centering, stretching, and relaxation would only help with her ability to focus and follow instructions, which is an ongoing challenge for many six-year-olds I would think. 

She goes on Thursdays and her class consists of children from kindergarten through second grade. 

This morning, she's showing me what she has learned. I love it!

In other news, I feel for her classroom teacher today. It's raining sheets and their field trip to the zoo had already been canceled.

If I were her, it would be a Bedknobs and Broomsticks kinda day.

How Crittle Got Her Book Back

When I was child, I did a lot of things I wasn't supposed to do. I figure that's part of the reason I'm so anxious about being a mother now. Is it all really going to come back to me…and then some?

Playette goes to bed with ease, but she's typically up before the sun. As long as she's quiet, we let her be. Usually though, she likes to wake the whole house up with her singing, dancing, readin, or whatever it is she happens to feel like doing pre-dawn. This gets her into trouble some mornings.

But today was one of the quiet times. I knew she was safe, so I stayed in bed and tried to get a couple of extra minutes of rest.

When I did end up going to her room, she was there with my book. I noticed it because it stood out since it was a few hundred pages thick, bright yellow, and amongst a sea of books for new readers.

No harm, no foul. I picked it up, put the cover back on, and had to laugh when I noticed a slip of paper had fallen out.

A few weeks ago, all of us went to the National Book Festival. While there, I purchased a book for the author, Terry McMillan, to sign. BD and Dez waited in line while Playette and I went to the tent to buy the book. There were only pre-autographed versions available, so that's what we got.

When we returned, BD informed me that I had missed hearing the list of rules. He said the only people with pre-autographed books would be able to request a unique inscription.

Oh, lucky day! Me being who I am, I tried to come up with something creative, something witty, something unique.

And then it came to me: "Freak is not a bad word."

That's a line from one of my favorite scenes in Waiting to Exhale, based on Ms. McMillan's book of the same name. It's totally obscure, but cracks me up. What makes it even better is that the little girl who says it in the movie just happens to be BD's cousin. "Perfect!" I thought. Then I moved on to thinking of things I would say during my short introduction to Ms. McMillan. I grew up borrowing my mother's books that she had written and sharing them with my friends and getting in trouble when they came back in tatters. So really, she played a memorable role in my adolescence. I could say that and I wouldn't be just another cliché-filled author-meeter.

I had a plan.

But what I didn't consider that my daughter would steal the show. 

I should've known better. 

Playette stayed next to me as we approached the table. I handed Ms. McMillan the book, she confirmed the odd spelling of my name, and then the two of them proceeded to have a dialogue while I stood there looking goofy.

No, wait. She also gave me a serious side-eye after she read my post-it note on which was what I had previously believed to be a fantastic inscription idea. All of the sudden, I felt like a doof and I started to blush.

All in all, it was fun to watch them engage. I felt so happy that my daughter could have these types of experiences. I'm thrilled when other people see the wonderful in her. 

It took me about a week to work up the nerve to check what she wrote in the book. It was absolutely not what I had suggested. Ha! It was perfectly respectable and generic. No problem. The line was super long and at least she didn't call me out for being a doof.

Totally random story, i know, but we had a really good day that day and I'm glad that the book reminded me of that moment in time and of the relationship Ishared  with my own mother. I miss her. She would have loved this girl of ours.

Reality Check

Somewhere along the way, I crossed the line into being the mom of an older child with Down syndrome. 

The thing is, I'm not sure when it happened. I mean, she's only six!

But, over time, I have realized that many mothers of younger children don't seem interested in my perspective anymore.

I thought I was still kinda cool, but no.

I saw it at the convention in Denver.

I see it in social media.

I felt it when I took Dez to the library for baby group today.

I was very happily surprised to see a mom there with a sweet little one-year-old with Down syndrome. I hadn't seen them there before. I plotted out how I would eventually make my way over to that side of the room, hoping to introduce myself before they left. I couldn't let them leave! What if they were new in town? What if she needed support? Aaaack! 

So, eventually, I followed through...confirmed that was, in fact, her child and then stepped out on the faith that I have mad Ds-recognition skillz.

"I also have a daughter with Down syndrome. She's six."

"Oh. Ok."

She said a little more, but I was already deflated. And reminded. I am old news. I know nothing about Early Intervention in this state. I can't help with preschool. A play date wouldn't be a good match because of the age gap. I bet there are a million fresh-faced bloggers out there who I don't even know about. 

They are whipper-snappers, forging new paths, creating bonds of which I am not a part. The fact that I just said "whipper-snappers" is pretty confirming. I'm passé.

They probably have their own secret handshake and wonder why we didn't make it happen when we had the chance. 

I'm starting to sound pathetic. And maybe a tad dramatic.

But still. I mean.

When did this threshold crossing happen? Was it kindergarten? And when will it occur again? Someone needs to warn me next time. 

Draw me a picture.

Can't you see I'm fragile?

Words Mean Things

I respect that.

And I also have know, intellectually, for a very long time that English is a very difficult language to learn.

But let me say this: I get it now. I really, really get it.

My child is very literal and things like homonyms and homophones? Yeesh. Things are getting even more interesting over here.

Wait. Did you know there was a such thing as a heterograph? I didn't until Google just told me.

Let's just throw that in there, too, just for giggles.

Need a chart? I did.

Sometimes it's funny and other times I just want to wave the white flag, pull the Ds card, and yell, "NO FAIR!"

No, really. I'm already wanting to ask for an exemption. Y'know, like, from everyone in the world. How the heck do you teach this?!

Here are a couple of examples:

Playette is great with her sight words. It's really her strong suit. She took those Rainbow Words last year and ran with them. She was done with the project in January.

But now it's time to start spelling.

She can look at the words "too/two/to" and read them correctly all day long, but when I tried to teach her how to spell "to" and only "to", I realized that we were going to have a problem.

I don't have a solution.

Do any of you?

No, really. I'm clueless.

Just so I don't stress too much before bed, here's a cuter example.

It tickles me every time.

See, I put my hair in a bun a lot. So, one day not long ago I did the same for Playette. I had done it before, but had never given it a name. For whatever reason, I filled her in and said it was called a bun...asked if she liked it. Did she feel pretty?

Her face screwed up a little while she looked in the mirror and tilted her head in confusion.

"What's wrong?" I asked her.

"Bun," she replied, "but no hot dog?"

Thank you! Tip your servers.We're here all week month.

I'm not even going to talk about signing and jargon today. My head would go boom. But I have before, in case you're interested. Clicky-clicky here.

"Fright Night"

That's the name of the episode, in case you want to set your DVR now.

The show is called Good Luck Charlie and the reasons I care are:

1. It's on the Disney Channel.

2. I have a six-year-old daughter.

3. A young actress with Down syndrome has a role!

I haven't seen it yet, but from the pics I've come across, she's rocking a cute outfit and I love it. The next airing is Thursday, 10 October, at 6:30pm Eastern. 

When I learned that the actresses name is Katelyn Reed, it rang a bell. It only took a moment to realize why. We had the pleasure of meeting Katelyn in 2010 when we were all present at a photo shoot for the book, I'm Down with You.

It was at that time that I probably left a lasting, weirdo impression with her mom as I gushed (and probably cried) about how much I appreciated seeing her daughter on the cover of the Toys R Us Toy Guide for Differently-Abled Kids back in 2007. Playette had been a newborn that summer and seeing Katelyn with Maria Shriver, who was then the First Lady of California right when we were about to move there, just did something to me. 

It gave me hope for the future. 

And now we've sorta-kinda come full-circle.

So, yes, we'll be watching and hoping for more great things to come for Katelyn. I love seeing people with Ds find success in mainstream media. It's something that's happening with greater frequency these days. (see: Karrie Brown)

I hope you'll check it out.

And don't worry if you don't have a kid around. The show is goofy fun and I won't tell that you watched alone. 

Not that I've ever done a thing like that myself.

Ahem.

Moving

Not us. Yet.

We rode around today and visited some places that I hadn't been in years. 

After spending some time with friends, we took a longer route home, crossing several state, county, and jurisdiction lines. 

It was a beautiful day and we were in no rush.

I had to laugh at one point because we were admiring the trees filled with changing leaves...from inside the car with the windows rolled up and the air conditioning on. 

We went past places where I've lived and used to frequent when I was much younger. I stopped to buy cookies of which I had been missing the taste for many years. (For those in the know, no, I didn't buy the bucket.)

Living this close to places where I have so many ties is still a new phenomenon.

And, I realize that I can't take this for granted.

We could be gone in a year. Maybe back across the country. Maybe in another continent. It's hard to know for sure at this point. We may not know until right before it happens. It's complicated.

No, really. It is. BD had to draw me a flow chart before I got it.

There will be hard decisions that will need to be made. Now that Playette is in school, we have different types of concerns. 

How much are we willing to do to provide her with some consistency? Can we make a life here work? Where else could offer the kind of support we've found here and without the fighting? We all hate the fighting.

When I see my friends who have children with Ds and have no plans to ever move, I sometimes feel twinges of jealousy. They have a community with supports and people that know their children and those aspects have a low likelihood of changing significantly over time. 

Or maybe there's family that lives close by and the children are raised alongside cousins, with regular gathering and built-in friendships. 

Perhaps there is a waiting list for services for adults with disabilities and, while it is unfortunate those exist, they can put their child on now so that they can prepare for future needs.

I try not to worry. We had options and chose this life. And it's not bad, just different. Unique to what many experience. I've enjoyed seeing new places and meeting so many wonderful people along the way.

I can't help but wonder what comes next and hope that we make the right decisions with the options that are provided to us.

I just look forward to being able to call someplace home again.

No Limits

I remember that when our daughter was born, and once we were told that Down syndrome was suspected, I had certain thoughts.

One of those thoughts is on my mind tonight.

I thought we would never be able to go places. Not ever again.

I pictured a life of us growing old, never traveling, never fulfilling the dreams I had drafted in my mind for years before that day.

I thought that's what Down syndrome meant for a family: You have to give everything up. 

I had always wanted to go to Fiji. That day in the hospital bed with my daughter in the isolette at the foot of my bed, peacefully sleeping, unaware that she was breathing in air that was so thick with emotion that it was  almost as if we had had invited a guest to share our room, I remember thinking that it would never be possible. 

I choked back tears and then choked them back again because they kept coming. I felt selfish. Why was I so worried about myself? Children with Down syndrome are given to people who are kind...patient...selfless. I needed to get it together. 

I did. Eventually.

Not that day or for many days after, but in time I realized that what I thought just wasn't reality for our family. 

Our girl didn't slow us down one bit. 

I asked BD tonight, just to be sure, and he confirmed...there has never been a time where we haven't done something based strictly on our daughter's diagnosis. Never.

So, while I can't speak for every family, I hope this is meaningful to someone. Maybe you're wondering, like I was, about the future.

We do things. All the time. Playette the has multiple stamps in her passport. For the most part, she does what we do.

I will go to Fiji someday. 

(But I'm not promising to take my kid. ;-)

Picture Day Politics

Today was a long one. 

At first, I was going to write that not much happened, but looking back on it -  and I'm sure some of you can relate - it was filled with so much, but I have so many days like that it feels...normal. I'm tired, but no biggie.

Today was picture day at school. I learned this great term from my friend, Alison. It's called "the politics of respectability." I think about that a lot. I think that, in a way, my mother dealt with something very similar, as do many other people, even if for very different reasons.

I spent my formative years in an area that lacked diversity. In other words, I can remember all of the black students in my neighborhood because we were all there were. 

There were the two brothers that lived two blocks up and on the right. There were Bryant S. and his little sister.

My point is that we stood out. And because of this, my mother was very conscious of how my brother and I looked and behaved. 

When I was a little girl, I was invited by our next-door neighbor to go skating.  After we had returned home, my mother made sure that I took the three dollars that Bonnie's mother had spent on me back to her immediately. 

That was the day I learned the word "freeloader." My mother said that no one would ever be able to say that about us. 

I don't recall the little girl on the other side of us, Heather, having that same conversation with her father. It was just a moment where a neighbor did something nice for another neighbor's child.

I distinctly remember my second grade picture day. My mother put my long, thick hair into two ponytails, one on each side of my head. I was wearing a two-piece striped outfit. I want to say it was purple. There was a skirt on the bottom, but you couldn't see it in the picture. I gave my best crooked-tooth-filled smile.

After a while, the pictures came back. I opened up my packet and was pleased with what I saw. I thought they were nice. When I got home, though, I remember my mother being upset that one of the barrettes on the end of my braids was not faced forward. She asked me why I hadn't fixed it. 

This moment, along with others, including even other picture days at school, culminated in an idea being formed in my head that I was representing my entire race at all times. There was a level of pressure that my peers just didn't experience. They were allowed to be children and do what children do, while I had to be careful… always.

The reason I think back on things like this is because I fear the pressure that I put on my own daughter. Not only does she have the similar circumstance of being the lone black girl, but she's also the lone black girl with Down syndrome. The fact that I have exactly ZERO experience with the latter makes it that much more difficult for me to relax.

Today, I went out of my way to try not to make too big of a deal about picture day. 

I didn't say anything to her, but, still, I woke up a bit earlier and put a little more attention into doing her hair. I changed out the shirt that she had on it first. I ironed her dress (after calling BD to find out where we keep the iron) even though I had no plans to purchase the photos. 

In my mind, I wanted her to look nice because I knew that the other children at school might look just a little bit nicer today. 

At the last minute, I did cave and wrote a check for the most inexpensive package. I'm sentimental and I would like to have something that reminds me of how she was at every stage.

But I won't get upset if she doesn't smile just so or if some hair is out of place or if that dress that I so meticulously ironed is full of wrinkles.

At least not out loud.

Kindergarten Roundup

Sure, we're already deep into the first quarter of first grade, but I really dropped the ball on the whole kindergarten thing.

I feel like I owe it to those of you that have been here following along to at least give an overview of what happened. I don't want to get too specific, but I can do better than, y'know, nothing.

Ahem.

So you may have noticed that I loved Playette's teacher last year. I mean lurved. Like, I wanted her to come over and play on the weekends. We could drink wine and play cards. I had it all planned out in my head. We would laugh and laugh and then I'd be all, "Would you like some more Moscato? Go fish! HAHAHAHA!"

Or something like that.

Is that weird?

Anyway. She was a nice lady and we had a good rapport, in case that wasn't clear.

But.

And there's always a but.

My kid. She just wasn't keeping it together in class. Her behavior was slipping into the unfavorable zone.

A meeting was called (which was good - they knew this wasn't how she came to them) and the consensus was that we would try placing Playette in the classroom next door. She would still see all of her friends regularly. She could keep her same locker. Several things would be put in place to ease the transition of a mid-year room switch.

I was sad, y'all. But this wasn't supposed to be about me. So we followed through, as a team, and I waited for the halo to reappear.

I waited a really long time. Too long, really.

I wanted to be patient. I didn't want to nag. I knew that the new teacher had been put in an awkward position.

But I wasn't getting the feedback that I needed.

So, with the help of a friend, I created a daily communication sheet.

And then I waited some more.

In the midst of all of this, more change happened. One aide left...and then another.

It wasn't because of my kid, I swear. Just circumstances. Regular, everyday, unavoidable stuff.

Keep in mind that my kid thrives on routine. Plus, she loved that first aide like her crazy mama loved that first teacher. (I guess we get attached.)

By the time Aide #3 was in place, it was about a month to go before the school year ended.

I'm sighing just thinking back on it.

If there's any advice I can give, it's "Don't wait."

If it doesn't feel right, speak up.

I feel like I failed my kid. Big time.

She was no longer comfortable. She was no longer doing her best. She was meeting the expectation, but the expectation didn't match her ability level.

I screwed up. The time just got away from me. I thought, but I didn't act.

So when the last day came, I was both happy that it was over and sad that she had missed out on so much.

I vowed to do better next year. This year.

I'm still stumbling, but I have hope.

This school thing is just not as easy as I had hoped it would be. At least in the early years. I thought it wouldn't get hard until later. Maybe it's me that's making it harder.

I better buck up before middle school.

Oy.





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Who She Is

She's amazing.

She's thriving.

She's annoying.

She an awesome big sister.

She's loud.

She's hilarious.

She's messy.

She sings and dances like the world is her stage.

She laughs and she cries.

She's a horrible hider and a wonderful fort builder.

She's compassionate and understanding, even when she's difficult to understand.

She has an amazing memory.

She knows how to get what she wants.

She loves her friends fiercely.

She's ridiculously cute.

She's an observer, far from a daredevil.

She surprises us every day.

She's so much like every other kid you know.

She's also a little bit different.

She's all of this and so...much...more.

She just wants to be given the chance to show you.




I guess I'm in for 31-for-21.  Stick around. Maybe I'll say something you like. I'm rusty, so bear with me...


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My daughter has Down syndrome.

Six years ago, before I even know there was a such thing as Down Syndrome Awareness Month, I couldn't say that.

It hurt.

The sentence would form in my head and before it could reach my mouth and even attempt to be expressed, it would get intercepted by my emotions, which would then form the perfect throat-sized lump while simultaneously creating a knot in my stomach that would rival even the most accomplished sailor's Bowline.

It hurt.

All I could think about was what they told me.

They came into my room when she was twelve hours old, before I could even see the symptoms on my own, before I had the opportunity to get to know her, before I had the chance to build up my defenses.

They looked at her and told me what they suspected. They wanted to take her blood. They needed proof of what they already knew and what it would take me quite some time to accept.

I consented, if only to show them how wrong they truly were. They may have been smart, but I had it on good authority that I had done everything right. I knew that my times of struggle were over. I knew that it was my turn to be happy. I knew this couldn't be my destiny.

They gave me black-and-white printouts from the internet. I could buy books from Amazon. I could try and breastfeed if I wanted to, but here were all the ways it would be difficult. I should look at these pages from a medical journal and try to decipher which condition I should fear the most. It was filled with percentages and descriptors, chances and odds.

She was no longer my baby. She was a worst-case scenario.

I learned to watch and wait for what I perceived to be the inevitable.

I counted how many times her chest rose and fell...wondering, "Is this heart failure? No, wait. Maybe this is."

I woke up in the morning, every morning, half-expecting her to have not made it through the night.

I read things that made me feel foolish for not having known sooner.

It was my fault because I declined the testing.

People asked me,

"But didn't you know?"

"How couldn't you know?"

"Can't they check for that?"

I didn't know to appreciate that my child was healthy.

I was too busy going to the Geneticist, Cardiologist, Otolaryngologist, Endocrinologist, Developmental Pediatrician, Audiologist, EFMP Coordinator, Pediatrician, and Lactation Consultant. I'm sure there were more.

I was speaking with the Parent-to-Parent Coordinator from our local Down syndrome family support group. I was reading things in online forums that would have done better to remain hidden.

At least the Early Intervention Case Worker, Physical Therapist, Occupational Therapist, Speech and Language Pathologist, and nurse for the weekly weight-checks came to me.

And people wondered why I wasn't myself.

It hurt.

I didn't know to appreciate that my child was healthy.

It didn't mesh with what was going on in my daily life.

This is why I believe that Down syndrome awareness matters.

Somewhere, there is a mom who is like I was and she feels lost and misunderstood.

Somewhere, there is a father who wonders if he's going to be able to love his baby.

Somewhere, there are grandparents who don't know what to do or say because all they know are things that are no longer relevant for a child born today with Down syndrome.

I want these people to be able to enjoy and celebrate this child.

I want their friends to congratulate them and be supportive.

I want them to know what's possible in ways that don't involve percentages and descriptors, chances and odds.

Life can be good.

Today, it is good.

My daughter has Down syndrome.