Happy Second Birthday Audrey!

Dear Audrey,

I can't believe another year has come and gone. How are you TWO YEARS OLD already! Stop. Just Stop growing up, I simply can't take it!

We had a fantastic ladybug birthday party for you today. Your favorite book these days is Ten Little Lady Bugs. You had a ton of fun. Aunt Amanda made your cake this year and I must say, It's probably her best one yet, and that's saying something! We had your favorites, pizza, lasagna, garlic bread, and fresh fruit tray that I made look like a giant butterfly. I really out did myself.

But nothing is more amazing than you these days. YOU ARE WALKING! Not just a few steps here and there, but walking EVERYWHERE! You have been working so hard for this and we are so proud of you. You are also quite the little climber! Dad calls you his Little Dare Devil and it couldn't be more true. You're picking up signs left and right and are even starting to sign some of your colors! You love to color, in fact, that's one of the only ways to get you to sit still! 

You know what else you are doing these days that's pretty darn impressive? Peeing in the potty!! You kinda love it. Or at least you're really into playing in the sink washing your hands and throwing toilet paper onto the floor...

Your brother is still your favorite person and I don't see that changing anytime soon. Don't tell him I said so but I'm pretty sure you're his favorite person too. The bond the two of you have really is amazing. It makes my heart happy. 

You really have changed the hearts and minds of so many people in your short two years. You challenge me everyday and I love you for it.

Love,
Mom

Top Three reasons why we will keep going to the NDSC Convention and why you should too.

3. Access to information

Throughout the conference there are six workshop sessions. During each session there are 10 to 12 different presentations going on to choose from. I dare you not to find one that is relevant for you and your family. Having behavior issues? There’s a workshop for that. Worried about planning for the future? There’s a workshop for that. Want to learn more about the research being done on the link between Down syndrome and Alzheimer’s? Yeah, there’s a workshop for that.

The workshops are fantastic but not the only source of information at the conference. The exhibit floor is another great resource. You have access to vendors and service providers from all over the country. Chat with a representative from Clemson about their college programs. Thinking about sending your child or young adult to a summer camp? Well there are tons to choose from. You will also have the chance to meet many adults with Down syndrome that are there representing their own small business. Did you know there is a woman with Down syndrome that makes her own Zumba videos? Me neither! Her name is Yulissa Arescurenaga and she’s crazy fit. We also got to meet a woman named Sarah Ely who owns her owns her own business, Down Right Charming. Sarah designs and sews the most gorgeous quilts. Find her shop on Etsy. There was a beautiful teal and coral one with sea creatures on it that I just couldn’t resist!

But the most valuable resource at the conference? The other families! For a whole weekend we were surrounded by families who were walking down a similar path. I talked for twenty minutes with a woman named Michelle that I met in the Starbucks line about SMOs. At the Awards Banquet we met a lovely family from Florida. While J.J. and I talked with the parents about education and early intervention, our boys, Aiden (10) and Jacob (12) played with a few toys Aiden had snuck down to dinner in his pocket. Seriously people, if you ever make it to the conference don’t miss the opportunity to chat up the person next to you while you lay by the pool. You’ll be surprised what you can learn from these interactions.

2. A conference for the WHOLE family

It really is a conference for the whole family. While last year JJ and I attended the conference alone, this year is was a family affair. We brought our two kids, Aiden and Audrey, my mom (Grandma), my sister (Aunt Amanda), and my little brother Noah (12). All three days were jam packed for all of us.

Aiden and Noah participated in the Brothers and Sisters Conference. Each day was filled with activities where they could share ideas and network with other kids. They learned about Down syndrome and disability related issues, including how to be an advocate for Audrey. It was a safe place for them to ask questions and maybe even express some frustrations. I think the experience really changed the boys’ perspective on Audrey’s disabilities and made them feel empowered to support her. Aiden’s group even put together these adaptive cars and tracks designed for toddlers with Down syndrome. Audrey was definitely impressed.

Audrey was well taken care of at Kid’s Camp while the adults attended workshops that interested them. Some adults MIGHT have been given suggestions on which ones to attend. 

Aunt Amanda covered the workshops on financial planning. Grandma attended workshops focusing on Large Motor Skills, she’s determined to get Audrey walking this summer. JJ and I spent most of the sessions learning about education and advocacy. We all attended the last session together. It was on the dreaded POTTY TRAINING. I’m pretty sure we are going to need all the help we can get with that one!

1.THIS!

It is unbelievably empowering to sit in a giant room full of people who just get it. All of a sudden you feel like part of a community. A huge community. That has your back and wants what’s best for your child. Raising a child with unique needs can be isolating. This conference is just what our family needs to remember that none of us are going at this alone.

Summer is HERE

And she is here with attitude! It's been hotter than Hates out lately. MB got out of school about a month ago and we've already done a ton of stuff! We took the kids to a drive in movie, went to the zoo, tried out a new splash park, oh and he went to boy scout camp with Grandma for a week. So yeah, we've been busy.

J, Audrey, and I actually just got back from spending the weekend with Sunflower and her husband in Colorado. There were quite a few first for Audrey. She went on her first hike, had her first quesadilla, and even had her first blow out in her car seat, So yeah, good times all around.

I looked back and realized I hadn't really done any development updates on Nugget in three months! Welp, a lot can happen in three months. So lets see, she is standing independently now, and can stand up with out help. She goes up and down the stairs, and can climb on and off the couch. No steps yet but I feel like they HAVE to be right around the corner. She has fully mastered a regular straw. Well in her way. She can drink from a straw but she doesn't do it the "right" way. She wraps her cute little tongue around it. You probably don't even realize this but when you or I drink from a straw our tongue is in, what they call, a retracted position. Blah, blah, blah. We are working on it.

She has a whole ton of signs these days. Probably around 30. She is participating in a study at MMI for children with DS. We have them to thank for most of her signs. That study and Signing Times. She maaaayyy even have a word or two. She's pretty stingy with them but she says "up" and what I think is "Aiden" also, the "uh" part of "uh-oh", Hopefully, there is more to come on that front. I think that's about it for her.

MB is having a fabulous summer (see above) and has decided to join Boy Scouts with his Grandma. I have my own mixed feelings about the organization as a whole but I think it will be an awesome activity for him to do with his Grandma, They are going camping again this weekend. I'm just glad I don't have to drag my ass out into the woods to sleep on the ground. Have fun Grandma!

As for me and J, we are back on the crazy baby making train. We still have a few popsicle babies left so we are giving that another go. I've been on estrogen for exactly 4 days and have gained exactly 4lbs. So that's fucking fantastic. It's not for lack of movement. my fitbit says so. Also, the crazy is already creeping in. I can feel it. Fingers crossed everything works out this time.

We have a busy next couple weeks, a few dentists appointments, an orthodontist appointment and of course therapy. Then we are headed to the NDSC conference at the end of July. I'm super stoked!

Well that was an emotional trip to the grocery store...

It was a pretty typical weekday evening. Audrey and I were running into the grocery to get a few things I needed to finish dinner that night. We were in the produce department picking out a tomato when a woman and her teenage daughter started talking to Audrey, They asked me how old she was and then went on about how cute and smiley she is. This isn't a rare occurrence. It happens everywhere we go, Not just because she's the cutest baby in the world, she is. But mostly because she loves to engage people. They glace at her and she instantly looks them directly in the eye and smiles. If that's not enough to get your attention she will then start yelling. I'm not kidding. She will yell at people she finds interesting until they pay attention to her. She's lucky she's cute. Any way, back to the produce department. Just as this woman and her daughter are about to walk away she leans in a little closer to me and says, "My sister has Down syndrome." I felt like I had been plunged into a tank of ice cold water.

It wasn't painful. It was shocking. In one short well meaning sentence I had gone from a woman in the grocery store with a cute baby to a woman in the grocery store with a baby who has Down syndrome. Obviously I know Audrey has Down syndrome, and obviously, I know that she has some of the physical characteristics of a child with Down syndrome. But when I look at Audrey and when I think of Audrey I just see Audrey. It was jolting to be confronted with the reality that people don't see her as a cute baby, but as a cute baby with Down syndrome.

I wish I could tell you that that was it. We checked out, got in the car. and drove home. And that while it was a shocking realization for me, that's the end of the story. But alas, life never just throws me for one loop.

I shake off the cold water and Audrey and I move on. We head to the dairy section. I noticed a woman and her school age daughter who are heading towards us looking a little extra long and hard at Audrey and I. I immediately assume that she obviously sees how adorable my baby is and then recognizes that I am incredibly out of shape and that she can snatch my baby and her and her 8 year old "daughter" will be able to out run me and steal my baby! I might have just read a human trafficking story I stumbled onto during my decent into a facebook rabbit hole.... BUT THEN  just as I had brought myself back to reality and convinced myself that I was being ridiculous. The woman stops me. You read that right. SHE. STOPPED. ME. Just as I'm about to grab Audrey and wrap my body around her in a protective yet pitiful fetal position the woman says, "I know this is weird, but I know you and Audrey from facebook." Uh, fuck yeah it's weird. My facebook profile is PRI. VATE. and I've never seen this bitch before. She then goes on to tell me that she knew my husband in college and they are facebook friends and she just loves following our family, and Audrey is just the cutest thing and we are so inspirational. And just like that, I'm back in my dunk tank.

Inspirational? What the fuck? We are just parents. We are just a family. I mean, at least once a day I'm ready to throw one of my kids in the garbage. That's hardly something to aspire to. But as she's going on and introducing her daughter to my daughter and saying something about one time she thinks we might have met at a house party, It dawned on me. The rest of the world doesn't see up that way. They don't just see a family. They see a family that includes a child that's different. That somehow our life must be more difficult. So difficult in fact, that just existing long enough to post some pictures and a few status updates on facebook makes us inspirational. I thanked her and told her I'd tell my husband she said hi. I'm sure she thinks I'm a total weirdo. So much was going through my head. I had all I could do to breath through the tightening in my chest.

I know what you're thinking. "Wow, that was an emotional trip to the store. Surely, she got the rest of her groceries and headed home, waited until the kids were in bed, drank a bottle of wine, and then cried to her husband." About half of that is true. I'll give you a hint, it's the wine part.

Audrey and I grabbed her almond milk and headed to the check-out. As we are approaching the checkout lanes a teenager employee, sixteenish, looks at Audrey with a hint of recognition and says to me, "Your daughter is soooooo cute!"

"Thanks." I'm trying to be polite but I really just want to get the fuck out of this grocery store.

"We can get you right over here." she ads. It doesn't take me half a second to realize she has an intellectual disability. It was mild for sure. Most people would probably think she was just a little awkward, but once you've joined the "club" you start to notice more. Anyway. As another teenager, a guy I think, is checking me out and she's bagging my groceries, she starts talking about the Special Olympics. And once again, I'm back in that fucking tank of freezing cold water. I mean this whole trip hadn't lasted longer that thirty minutes. I wasn't sure I could shake off the cold and stop shivering long enough to have a coherent conversation. I was determined to grit my teeth and engage this girl about her experience. I asked her about the events she competed in. She proudly told me what she had already competed in, what she was competing in now, and what she wanted to compete in next. She told me about the Young Athletes program and encouraged me to sign Audrey up. She told me about some of the kids she competed with who has Down syndrome and how cool they were. I paid for my groceries, wished her well and we were on our way.

I'd love to tell you that our conversation was moving and enlightening and changed the way I viewed the previous conversations that revolved around Audrey disability. But that would be a dirty rotten lie. Honestly, at that point. I had all I could do to keep my shit together long enough to get to the car. I loaded everything, Audrey included, into the car, practically threw the cart into the coral, got into the driver's seat and just cried.

It was the first time I was forced to face a hard truth. That while I will always see Audrey as just Audrey, the rest of the world will always see her as Audrey. A person with Down syndrome.

All In a Day's Work...wait a minute, this was my day off!

7:05 wake up with Audrey and change her because she peed on her clothes

7:15-7:45 lay in bed wishing I could fall back asleep while Audrey kicks me in the gut.

7:45-8:00 make Audrey breakfast and feed her. Call husband to ask him to call MB out of school, then be sure to call the vet right at 8am

8-8:15 vet isn’t answering, Audrey is now throwing her cup and food off the tray.

8:15 give up on the vet for a minute and get Audrey cleaned up.

8:20 finally get ahold of the vet. They want to see Misha ASAP.

8:20-8:30 get Audrey and Misha in the car. Wake up MB and get him in the car too.

9:00 finally get Misha to the vet.

9:02 Audrey falls asleep on the way home from the vet her sleep schedule is off now and my whole day is fucked.

9:20 Audrey’s asleep in her crib so I make Aiden breakfast. Green shake (for all the vitamins) and blue berry pancakes. Give Aiden his meds. Shit, did I take mine? Probably not…guess I should do that.

9:25 do a circle around the yard to try and figure out what the dog cut herself on. That dog better be as hurt as I think she is. If the vet sends me home with a bill and a tube of Neosporin J’s going to kill me.

9:30 finally get the email I’ve been waiting for from Audrey’s case worker with her latest IFSP. I can finally send in her disability services application. You know, the one for when she’s an adult with a 7 year long waiting list. Also, remind MB to do his reading.

10:20 hurry and shove the last few required documents into that envelope, address it, and get it in the mailbox. Audrey’s up and she’ll only hang out in that crib for about thirty more seconds.

10:30 Bring Audrey downstairs and banish MB back to the front room. Make him shut off the Kindle and work on his model cars.

10:45 Call Dad to see if he can watch MB while I take Audrey to therapy. Clearly I can’t take MB to therapy with strep and I don’t want her to miss it.

10:45-12 put together Audrey’s splash table and make her play with it. I need to figure out how to tire her out enough to squeeze in one more nap before therapy. Otherwise I’m toast. Also, decide we are having tacos for dinner. Get out meat and make a mental note to stop at the grocery store. We are out of some essentials.

12-12:30 feed Audrey lunch and get her cleaned up and dressed for therapy. Now I can let her sleep for an hour and just pick her up right from her crib and throw her in the car.

12:30-1 Audrey’s asleep. But I should probably feed the other kid. Make him spaghetti. That reminds me. I haven’t eaten yet and I’m starving.

1-1:30 pull myself together a tiny bit. At least my teeth are brushed. Pack the diaper bag and get the kid in the car.

1:30-1:50 drive to therapy. Listen to pod cast and breath.

1:50 look at me all early. Sit in my car and send email to MB's basketball coach asking if they have practice tonight and try to confirm game on Saturday.

2-3 therapy. Audrey does fantastic. So glad I got that extra nap in.

3-4 drive home and make a quick stop at walmart for basics. Audrey needs yogurt and/or apple sauce to take her meds, J needs milk for his protein shakes, I’d really like bread because I’ve been CRAVING an egg salad sandwich and, we will need tomatoes and sour cream if we are going to have tacos for dinner tonight. Also, call the vet. I can’t decide if I’m more worried about Misha or what J’s going to say when he gets the bill. Misha’s just getting out of surgery? Fucking fantastic. Call J. His reaction is about as I expected. I also, have to tell J he has to take MB to basketball practice. I still haven’t heard back from the coach. I’d better leave that detail out. He’s already pissed about the vet bill.

4-4:20 Holy shit, is it really only four o’clock? When is J getting home again? Crap, I’d better figure out exactly where practice is and let him know. Shit it’s on 144th and Blondo. He’s going to be pissed. Maybe I’ll just text him….

4:20 Welp, I guess I better get dinner ready so MB can eat before he has to leave for practice.

4:30 Awe shit, Audrey’s signing eat. Guess I better stop what I’m doing and feed her. Also, make sure to send MB upstairs to change and brush his teeth and hair. We’ve kind of been slobs today. Ooh, I also need to load and start the dishwasher.

5 OK dinner is done. MB’s eating, Audrey’s already eaten, I think I’ll have a taco. But standing in the kitchen. If I sit down on the couch that little shit won’t leave me alone. If I go in the dining room with MB she’ll lose her shit. Because, you know, she hasn’t had a nap since 12:30. Oh crap, don’t forget to give MB his meds.

5:03 crap! I need to call the vet back. Misha is a little unsteady but can go home. They’d like me to wait and come as close to six as possible.

5:15 J’s home. Thank fucking god.
5:20 I need to leave to pick up Misha soon but I really don’t want to take Audrey. Sparkles doesn’t answer. Mom does but then I remember she hurt her back. Then she randomly remembers that she got a call today and basketball was cancelled. Wish I’d known that a few hours ago.

5:40 leave to get Misha from the vet.

6:00 thank god it was under $200 maybe J will only be medium fussy when I tell him.

6:30 make another trip around the backyard to try and figure out what the dog did to her foot.

6:50 J wants to go get beer. I’m crossing my fingers that he’ll put Audrey to bed when he gets back.

7:00-7:30 J leaves, Audrey loses her shit. MB wants to make popcorn. Audrey and I make popcorn too. She has stopped losing her shit. Give Misha just a tiny bit of water and pray she doesn’t puke. I really don’t want to clean up puke.

7:30-8 J puts Audrey to bed. Thank God. I just need a minute. Send MB upstairs to take a shower and get ready for bed.

8-9:30 I just can’t even move. I don’t have energy for anything more than another glass of wine and an episode of Daredevil.

10 bed time! Oh my god, this bed feels amazing.

Splish Splash Audrey's Taking a Bath!!

This girl LOVES the bath! I also think she's trying to say "yes".

It's official! Audrey is signing!

Of course her first sign is/are eat/drink because, you know, she's my fat kid. But it's her first consistent meaningful sign. She also throws in an "all done" from time to time. Moral of the story? Just keep going. We've been signing at her for the better part of a year and she's FINALLY signing back. It's pretty freaking fantastic.

Audrey is also completely off of the bottle. It was actually a little too easy. We just went down to two a day around Thanksgiving and then down to one at night a few months later.

Her other new exciting trick? Audrey is going pee on the potty!! Obviously we aren't potty training or even close but one day I was curious what she would do so I put her on it. She looked at me, looked down at herself, and peed. For a while she was doing it every time. Now she's kinda hot and cold with it. I guess you could say she's "over it".

Audrey also dyed Easter Eggs for the first time this past weekend. That project could have been a disaster but she did fantastic!! She picked up on what she was supposed to do immediately. No drinking the dye, no knocking everything over. It was fantastic!

Of course since she was in her high chair she thought it was time to "eat"!