What does the cow say?

No. That's not the new name of the blog, but wouldn't that be catchy? No no. I was finally able to get the one animal sound Sean knows AND is able to express on video.

Dear Universe

Here I sit at my dining room table. I'm wondering whether it's "you" I need to be writing this letter. Maybe it should be God. Maybe it should just be addressed to myself. No. No. That can't be right.

I am sitting here feeling like the powers that be are not on my side. There is one thing on this earth I keep asking for. One thing that I work hard to help Sean achieve. It's for my son to WANT to stand on his own. I want him to WANT to walk.

I know he can. I know he knows what to do. Why oh why can't it click for him? Why is he so content to hop on his butt? And for the love of all that is holy..... why must everything, this skill included, be his idea?

I know. I know. He's gonna do it when he's ready to. Just like everything else. I am trying to let go. I'm trying to accept that this is where he's at, but it's so hard to know he CAN and just WON'T. It's beyond frustrating. It's hard to be on the verge of 2 years old and have this be where we're at. It weighs on my mind and it hurts. It's hard to hear Meredith ask why her little brother isn't walking like her friends little brothers & sisters. It hurts to have to tell her that he will and not have an answer when she asks when.

I have tried everything our various therapists and friends have told us to try. I have tried to break it down into ever smaller steps.

But.... unless it's his idea... it's all for nought. I'm about ready to throw my hands in the air & give up.

Anyway.... here I am universe. Begging. Pleading. Asking for my son to do it. To just stand up and/or walk. Give me something. Something to hang onto to make my efforts feel like they're worth it. To help me feel like I should keep working. To help me feel like it's not for nothing.

Yours truly,

One very discouraged mommy

Doing the Friday Dance

It's Friday. It's time to shake off the funk I've been feeling and put the week behind me. It's time to finally do what my gma tells me to do. Give myself a big hug and look at what I have accomplished.

It's hard. Hard to really acknowledge that I had a hand in doing something positive. I don't lie when I say I'm hanging in there. I am really just hanging in there. I struggle everyday to find a balance between patience, carefree parenting and "wow could you just leave alone for 5 minutes?" And lately I've been in a serious mommy burn out funk.

But tonight I followed my gma's advice. After allowing a later than usual summer like evening, I watched. I watched my kids smile and learn. I watched them play in a way they weren't able to before. I looked around and saw what I had manage to accomplish. Not without help of course.

In a few short months we had managed to create a whole new life and almost settle into it like it's been our lives forever.







In just a few short weeks I have taken the advice of another mom whose son also has down syndrome (you can find her blog here ) & worked really hard on meeting Sean where he is. Yes yes I'm still pushing him to reach new heights, but not with the same hardcore vanity I once was.

I'm pretty sure that boy is mocking me, but I can't prove it. He knows how heavy he is getting & that I'd really like him to walk. I'm pretty sure he's running laps at night in his crib.





Let me tell you that it's been so hard for me not to get frustrated. I know he can do it, but he can't. Does that even make sense? I know that it's the path from the brain to the feet that gets Sean every time and I feel powerless to help him figure it out. If you know me you know how much I love to feel powerless.

I'll post an Early Intervention, therapy, what is Sean doing now? post shortly.

Check Seany Rock Out!

I really thought it would take a lot longer than the 3 days it did for Sean to do this. We were truly here for 3 days before Sean ventured up the stairs. His physical therapists in NY would be so proud.

Be Careful What You Wish For

Some of my hopes when we moved down were that there would be families with children the same ages as Meredith & Sean. I hoped we'd like them and that my kids would have more friends than just each other and us. In NY I found that everyone already had their clique or just didn't have time to get together. 

I got my wish. We found families with kids Meredith & Sean's ages and Meredith & Sean like the kids. Rob & I like the parents. Win win right?

Wrong. I mean yes it is win win, but it's also win lose. Seeing & being around all the kids around Sean's age had made me painfully aware of just how immature he really is. By all specialized testing, Sean is right where he "should" be in all areas except gross motor skills (standing, walking). Yay! Let's celebrate!! 

Yes he's in the dog crate

Only all I wanna do is take him home, lock the doors and wait for him to get "there". I hate watching other kids his age running, sitting at picnic tables, understanding, climbing, etc while he sits in the stroller during an activity like dying easter eggs at the picnic table. It hurts me for him. 

In September he starts school with these same age peers and I constantly wonder whether he'll mature a lot between now & then. Will he be able to walk by then? How about run? Will he be able to sit in a chair & understand that he cannot kamikaze out of it head first? I'm sure that the teachers will not appreciate that much. Will he be able to understand "come to circle time"?  

How much less mature (in general) will he be in September? Is there any chance that he'll even remotely catch up? Yes. I know that being around his same age typical peers will be good for him. He'll be motivated to achieve more because of them and they'll grow up only knowing Sean. Not "ew who's the special kid?" I'm so happy for Sean to have friends, but I wish he was able to interact with them more on their level. 

I've learned how to put my big girl panties on & suck it up, but on days like today I just have to walk away before it all gets to be to much for me. I don't like to talk about it much because who wants to bring the party down? And really.... I don't want mine or my family's life to be about down syndrome. I want it to be about life. I love my son more than life itself, but some days it's harder to face that we are in fact different. That we have a different un-hideable (yes that's a word) dynamic. 

Sean is doing well and for that I'm grateful. It's just much easier to live in denial when he's the only little one around. It would probably be easier if I wasn't the only one in this group in my situation, I haven't found anyone willing to bridge the gap with me yet. Maybe one day soon that will change. 

Until then.... get over it and move on. Right? Right!? 

Sean's Update

Sean is flying through special instruction. He knows a lot of his colors, his capital letters and he's starting to really catch onto body parts. We love that his special instructor uses toys we already have & that we all know Sean loves. It helps to keep him focused.

Sean's really catching onto pretend play too. His favorite pretend toy by far is my cell phone. He usually holds it up to his ear backward and babbles into it. I always wonder who he's talking to.

We're still trying to find new ways to get Meredith involved in teaching Sean. We've found that by making it a game & laughing as hard as we possibly can whenever they're happy doing something together works as a great motivator. Sean will do absolutely anything for Meredith. Who knew that my 3 year old was such a glory hog?

Now that Sean is more purposely mobile it has opened up a whole new world for both of them. Sean will follow her anywhere & get into any trouble with her.

Giggle giggle giggle "Seany. Mommy won't see us under here." Giggle giggle giggle

We went to Charlotte to look at houses. He was such an amazing trooper through the whole thing. He's absolutely obsessed with all things airplanes. Maybe he'll be a pilot when he grows up. How cool would that be? He slept most of the way on the plane.

While we were there we had a few adventures. Meredith figured out a new way to torment Sean. SHe holds onto his shoelaces while he tries to get away. She thinks it's hysterical. Him..... not so much.

And yes.... Meredith went on the plane with her Belle dress on.

We saw about 24 houses in 2 days and decided on one in a great community with great people in Cornelius. Amazingly enough, the house we chose wasn't through a realtor. We're so excited. But looking at all those houses really tired Seany out. Poor kid.

We went to Discovery Place because we just needed a little down time. It was really incredible to see how different Sean is compared to just a few months ago. He's more willing to try different things. He's also more willing to be shown how things work & actually demonstrate what he's learned. He's not one to shy away from a little pubic nudity if it means he gets to play a little longer either. Both kids were SOAKED after playing at the water table. The more wet Sean got, the more clothes he lost. Lesson learned. Bring an extra set of clothes for each kid next time we go.

 

It's amazing how someone so little can take up so much room on the king size bed. He earned that room though. 

Now that we're home, the packing is in high gear. The only way I have found to keep the kids from "helping" is to give them their own box to play in while I fill my box. I've also given them crayons to decorate the boxes. 

When we got home we saw an endocrinologist because Sean's TSH was high normal at 5.68 just before we left for Charlotte. Just 2 weeks later it was at 5.54. Sean has been showing some symptoms of hypothyroid. We never had it tested because our pedi assured us that because Sean was still growing taller, it wasn't necessary. Of course now I could kick myself for not asking for it to be tested anyway, but oh well. After discussing the results with Dr. N, Sean is now on 25mcg of Synthroid. Because the thyroid controls & affects so many different things, we chose to not wait to treat him. It's inevitable for Sean regardless of his down syndrome since he has a strong family history of thyroid issues. 

Of course I have been in denial about Sean having yet another illness. He was pulling at his ears & I was just chalking it up to teething. And then it happened. He started coughing and it was really gurgly. Yes that's a real medical term. I waited another day and then when he was gurgly while he laughed, I knew it was time to pay our favorite pediatrician a visit. I swear to you, I see that man more than I see my own husband. Sean had bronchiolitis, free fluid in his lungs and a double ear infection. It wasn't teething. :( He's on steroids, nebulizer & antibiotics. I just want you to know that trying to coordinate synthroid with these other meds is maddening. 

But my poor sick boy needs me to do it so I make it happen. 

Of course through it all he's still the Kamikaze Kid and making my heart stop at the drop of a dime. While talking on the phone with my friend, Sean pushed & walked behind the yellow chair. When he thought he'd reached his destination he started to climb on it. He then realized he was to far from the cabinet and pushed it closer. The fish is in trouble when Sean finally figures out this climbing thing. 

Today is of course Superbowl Sunday. I watch it for the commercials. Sean watches it for the excitement apparently. 

Don't worry, Lady M is going to get her own update. Because they're both doing so many things these days, they each require their own posts. Especially when I take time off. 

Celebrations abound

There is much to celebrate today. We're celebrating not only Hanukkah, but also a change in perspective. I can no longer think of Sean as a baby. Between the cruising around, tormenting his sister, climbing on the dogs, etc. He's quite the little boy. 

But there was something today that finally made me put it all together & realize he was not a baby anymore. He's relating to his world in a whole different way than he used to. He's no longer a passive participant just along for the ride anymore. He's an active participant with wants & likes. He also has some dislikes that he's not so shy to tell you about. 

Something about the way he looked out the window. It was like he realized there was a whole world out there & holy goodness he was going to look at it all at once! 

 

Tonight as we celebrated the first night of Hanukkah. I was granted access into a world only known to those that have kids. Well... really those that have hard headed, do it on their terms, kids. 

As we were eating, I stopped to talk. I didn't look at my plate or my food. Where was it going? Sean wasn't hungry. He had stopped eating & was almost asleep. 

So then why when I went back to get my fork, it was missing. Not only was my fork missing, but my whole plate was too. It was sitting in front of Sean and he was doing this.

Someone care to tell me when he decided he was gonna do this? Not only do it, but do it with finesse!!! What else is that little stinker hiding? What else can he do that he is just choosing not to? I bet it's standing without assistance or walking. You know.... he does seem to get to places awfully quickly when I'm not looking. 

Everyone had a good time. 

 

And when we got home we opened some presents & Meredith & Sean opened their gifts from their Bubbe. They each got their own Zoobie. I'm sure once Sean comes down from his "WOW!!! Paper." high, he'll really appreciate his. Meredith is sleeping on hers & using her blanket. Thank you bubbe.