Geez. Where has Flat Stanley Been?

Well Flat Stanley has been on quite the adventure here with us. We've been totally slacking really busy.

Stanley went & visited Lake Norman. We played in the sand & built sand castles. It's no Coney Island, but it'll do.

Sean thought it would be funny to bury Stanley in the sand.

We went bowling. It was Meredith's and Sean's first time. I'd say it went well.

We took Stanley to the aviation museum. It was soooooo cool to get up close & personal with the planes.

   

It was even cooler to see a replica of the Wright Flyer.

Stanley went to Discovery Place and tried all the gadgets.

Then he saw some fish.

And played at the ultimate water table.

We saw friends.

And no one knows how to Dunkin better than Stanley.

We mined for gold.

Stanley visited the Charlotte Nature Museum and got up close & personal with some chickens on Chicken Day. Only in the south man. Only in the south.

Saw some turtles & butterflies. Even watched as Sean got someone to open the butterfly door & let him loose.

No trip to the Scott house is complete without the ultimate road trip!!

We drove to South Carolina to visit a house we ended up not liking enough to buy.

Then we drove up to NYC.

Where Stanley got his first taste of NYC rush hour traffic.

He rode the train.   

Stanley had some NY Cheesecake.

He visited Rockefeller Center and got up close to a zamboni cleaning the ice on the skating rink.

He thanked God for such a wonderful trip at St. Patrick's Cathedral.

Visited FAO Schwartz and met an actual toy soldier.

Had breakfast at the Stardust Diner where all of the waiters & waitresses sing. Pretty well I might add. Except for one. She stunk, but can't win 'em all.

He visited Times Square and couldn't believe how incredibly bright everything was. Even at night!! It was brighter than daytime. Craziness.

We went to Jekyll & Hyde's for dinner where Stanley met Dr. Hyde. It was a very eery place complete with a talking elephant who threatened to trunk slap people.

He met one of NY's Finest, a police officer on horseback.

We went to the Central Park Zoo.

He even got to ride in a horse and carriage through Central Park.

And then we headed home. I swear we went through Maryland too, but it didn't have a "Welcome Center". What's the deal MD? I know it's only 10 miles, but come on. I'd like to be welcomed properly. Not by just 2 troopers waiting to see people speeding through Pennsylvania.

Leaving NYC and going into New Jersey. No welcome center there either. Humph. 

Insert Maryland Here

Gagan, we've had a lot of fun with your Flat Stanley and we'll be sending him home to you soon. He's coming complete with one of his stunt doubles. His DSNY stunt double decided to stay in NYC since he was having so much fun and another stunt double decided to go for a swim in Lake Norman. He apparently forgot that he was made of paper. He will be forever missed. 

We hope you enjoy Stanley's adventure with us. 

2 1/2 years later... Would I change Sean's diagnosis?

There is a beautifully written story from a grandma to a little girl with Down syndrome.

She writes about how magical it was to take her g-daughter to Disney and how beautifully behaved & concerned about everyone else her g-daughter was. I think that's awesome! She also goes on to say that when her g-daughter was 4 or 5 she would've taken away the Down syndrome to make her g-daughter's life easier, but now she sees that would've made everyone else's life easier.

Anywho, while I think this tribute to love and the very spirit of a child with Down syndrome is beautiful, it made me wonder whether I'd think the same way.

I would 100% take away the Down syndrome if I could. I see how people react to my son. I see the looks of surprise that he's so "normal". I also see the looks of pity when he struggles. I see the preconceived notions people have about him & then don't even give him a chance to be "normal".

You know when he's walking up the stairs at the playground and someone says "Wow! Look at him go." Yes. Look at him go. 2.5 & walking up stairs. Imagine that. (And yes I rolled my eyes) Or when he's just being silly and uses paper bags as puppets.

But Jenn.... if you take away his having Down syndrome you'd take away his personality. His quirkiness. Yes and no. My son is more than Down syndrome. If Meredith is any indication (and she must be, she's ours), he'd still be a silly kid. He'd still be a holy pain in the butt (said with the utmost of love)who unrolls any paper product he can. Hence the nickname toilet paper bandit. He'd still be a 2.5 year old little boy who is happy, rambunctious, opinionated, stubborn and the most amazing little boy I've ever met in my entire life. So his personality may be different in some ways, but my mommy gut tells me he'd still be the same Sean I know & love and still allow to live in my house anyway. ;)

He'd still take off running (as all my friends have told me their boys do) every single chance he got. You know why? Because he's faster than me and he knows it.

He'd still love his sister enough to sit at the end of the slide to catch her when she asked him to.

He'd still throw a holy fit anytime we walked out of a major child directed store without something he would die without. Ya know why? Because he's a child. He learned from his sister (as I blush for allowing it to happen) that if you throw a big enough fit and scowl enough, mommy will probably get you what you want so she can be less embarrassed.

See where he learned that from?

And if he wants to ride his bike, but I want him to walk? Yikes! Want to snuggle, but he's got other ideas? Better shield your crotch because you will get kicked. How about if he wants to play in the water & you don't want him to? Not pretty.

Also... my kids behave MUCH (read 1000%) better when they're with their g-parents. I did too. I knew I just could not get away with being bratty to my g-parents. I acted well so I'd be invited back. ;)

I'm glad that g-ma hit the behavioral jackpot. I'm glad that her g-daughter didn't embarrass her in Disney. And I know plenty of parents of children with Down syndrome that say they wouldn't change it for the world. I'm not one of those parents. My kids will undoubtedly embarrass the snot out of me in Disney. They do in Walmart. Why not Disney? My kids will behave like greedy little brats. 

I want "you" to make no mistake about it. It may be selfish. It may only make our lives easier (though I doubt it), but if I could...... I'd take away Sean's having Down syndrome. I'd take away the extra doctor's appointments. I'd take away the drs treating Down syndrome before they treat Sean. I'd take away the therapies. I'd take away the lack of coherent speech (compared to his typical peers). I'd take away his learning differently. You know why? Because those things don't give Sean his personality. They don't make him silly. They don't make him a pain in the ass (hello? he's a 2.5 year old boy).

Yes. My son is wearing a turtle as a hat.

And he allowed his mother to put a giant fuschia flower in his hair. 

Those things do make his life less convenient. Those things make it harder for HIM. For Sean. He gets frustrated when his short fingers make it difficult to play the guitar. He gets angry when his coordination or lack thereof, make it difficult to get his foot over the stupid rocking horse. He understands that he sees someone else doing it & it's easy for them. He understands what people are saying to him & gets angry that someone can't understand him when he speaks.

So.. no. I wouldn't change Sean for all the world. I love my little man. I would change him having Down syndrome though. And if that makes me a bad mom then so be it. I love my son. I accept that he has Down syndrome, but I don't have to like it. 

Even on my darkest days...

Sean's giggling can bring a ray of sunshine. 

Who knew dog toys could be so fun? 

So sweet your teeth will hurt

My kids spend a good deal of time thinking of and implementing new ways to annoy the snot out of each other.

But then there are other times. Times that are so sweet my teeth hurt.

Times like.......

Allowing his sister to perfect her make up technique on him

Her allowing him to perfect his gentle touch. And not knocking him 

over when she inevitably gets poked in the eye with a make up brush

Ooooooh what else do you have in there? 

Allowing him to go through her purse.

She has a purse. He has a murse. 

There are times like riding bikes. 

And..... 

Walking into school

Allowing your little brother to play with you & your friends

Allowing your sister to play video games with you

And not throwing her off of you when she tries to say she's stronger. 

Being a good sport while trying on some fancy heels. 

Everyone knows... the first step to being a fabulous drag queen is learning to walk in heels

Yeah..... The days like that make me not care that it looks like a supermarket exploded from my kids' kitchen. Or the days when it looks like Nascar threw up all over my living room.

It makes me sigh with relief that we must be doing something right. 

Silence speaks volumes

Often times when the least amount of words are spoken, the most is actually being said.

I am writing this because I need to get it out. I need to get the feelings out of my system because they are eating me alive.

I feel very strongly about that. I don't say anything about someone I wouldn't/don't say directly to that person. Anyone who knows me well, knows that. I don't allow others to think it's ok to disrespect the most important people in my life (or anyone for that matter). Again, if the people closest to me have a problem, I do too. I support my husband & my children and those closest to me 100% even if I don't agree with their cause. I also don't believe that if you're disrespectful of me, you have any entitlement to my kids & their welfare or me and mine.

So why then do I feel like the same is not being done toward me? Why do I feel like I have chosen people to share my life that allow others to think it's ok to disrespect me? Why do I feel like I don't have anyone on my side? Why do I feel like I'm not supported by those closest to me?

The above questions make me ill. I feel sick to my stomach.

Growing up, I always felt alone. Always. I never felt that I could trust the people I was supposed to be able to trust the most. In my teen years that was only proven to me over & over & over again. The people that were always supposed to be in my corner, never were. The people that were supposed to support my causes never did. Never kept my secrets. Always said they would, but never did. Never told anyone it wasn't ok to disrespect me. Always said "yeah yeah. It was wrong." And right back to being their best friends.

As I reached my adult years and have grown a tad more wise, I've made wiser choses as to whom I chose to share my life with.

Some of those choses have proven to be good choses. Some not so good. But I learned from them. All of them.

And now I feel that way again. In recent years, I have stood by and allowed so many things to pass right under my nose because it was for the greater good to do so. Certain things though.... I just cannot.

Unfortunately, allowing those things to pass under my nose has bitten me right in the butt. Unfortunately it doesn't seem to matter that I feel very strongly about something because I am once again being asked to compromise. When is it other people's turn? When does someone, other than me, say enough is enough. YOU WENT TO FAR! When does someone stand in my corner?

For now, I have chosen not to bring it up beyond what has already been said. It will only serve to frustrate and upset me more that those I felt I could trust, I can't.

Gross Motor Eval Update

Well.... after much wracking my brain trying to figure out how E could've rationalized that Sean was between 11 & 15 mos in regard to his gross motor development I took it to Sean's expert. She is the leading expert in all things Sean and gross motor together. His physical therapist. You know the one that sees him every two weeks.

We went through the areas that Sean supposedly didn't do well in and she looked puzzled. After some discussion and Sean's therapy session we went over the same Peabody test that E administered.

During Sean's session we looked at various items. One of which being going up & down stairs unassisted. Guess what! He did both. Unassisted. N was there to catch him if it was needed, but.... He also threw a ball with no problem. :\

Anyway... after going through the Peabody, N determined that Sean is at a 25-26 month level in his gross motor development. That would be spot on for where he's been since we began this journey. After that 26 month mark, Sean is scattered in what he can & cannot do until roughly 36 months. Where he can do certain things well and other things he cannot do. Again, right on track for where he's always been in physical development.

N looked through the Peabody test and made her determinations based on what she has physically seen Sean do. I had no input. Where Sean is lacking and what will always set him "behind" is jumping. Jumping is a big part of the 24-30 month milestones. He has the basics and has gotten air, but not consistently.

After all is said & done... we have stepped up the stair factor. Sean is no longer allowed to be lazy. At school, he is encouraged to walk up & down the stairs when helping him will not put the other 2 year olds to in danger. At home he is to walk up & down the stairs. Unless he is alone. Then he can do it anyway he feels most comfortable and safe.

Why was getting an accurate evaluation done so important? Well... One of Sean's old therapists told us that if Sean is not ready to do certain skills it only results in frustration for me and him when he's pushed to do it and cannot. It also prevents him from laying good foundations to other skills. Since so many evolve from one another.

Sean was & is clearly ready to do stairs unassisted. He goes up alternating feet, holding on with one hand. Going down it's the same foot, but holding with one hand. So that will be what we work on. Confidence and then alternating feet going down. Finally alternating feet without holding on up and down.

We'll also be working on jumping and balance. He can balance on one foot for a second or two, but we'll work on him being able to do it for longer.

His strength and tone continue to be good. His issue continues to be his coordination and his lax ligaments in the hips.

Sean will do anything for his therapist. They have an amazing relationship & I'm happy to have found her. I'm happy that I have a great relationship with her as well.

I can't believe it's been so long. An update.

Since I've posted here. Things have just been a little busy around here.

Christmas was very nice. We spent it at home celebrating as a family. I was very sick on Christmas Day. I didn't know it until the next day, but I had pneumonia.

Santa treated the kids very well and as they were opening presents, I was taking ornaments off the tree. The problem with getting a real tree is that you don't know if you're bringing anything else home with you. Unfortunately for us, we brought weevils home. When they started dying from the heat in our house, they started to litter the floor. Of course that didn't start to happen until Christmas Eve. It was very exciting (said with sarcasm).

Rob's parents came down, but they weren't feeling well either. We missed them though. Meredith came down with the flu. Thankfully she wasn't hit to badly. And she's the only one who got it. Thank goodness.

Sean.... Mr. Low Immunity stayed healthy. Go figure. We're still trying to find our way with this one. I may end up going back to NYC to visit with an immunologist to get some answers.

Sean also met with his new cardiologist. We found out that his pulmonary valve will definitely need to be replaced. It is allowing 100% backflow at this point. Dr. Greene has said that it's expected and we knew it would probably happen. We were really hoping it would've taken longer. Dr. Greene said not to worry about it. That his ticker was functioning just fine & wouldn't affect Sean at all.

His right ventricle is slightly enlarged and as he gets older, it will get bigger. When he's a teenager, he will have the valve replaced (probably by catheter) and the size of his right ventricle should immediately go back down to a normal size.

Our new year celebration was quiet and that was a good thing. We were supposed to goto a kid friendly party, but because of Meredith's flu we stayed home. It was just as well. We drank a few glasses of wine in our pj's while watching Dick Clark's Rocking Eve. We had fun watching the top 30 artists made famous by Dick Clark.

Next week we are meeting with a new geneticist. I wasn't thrilled with what I was hearing about the Charlotte area geneticists. So we chose a geneticist near Charleston. So far he has been a wonderful man with lots of helpful information. We're not seeing him because we need to know anything about Down syndrome. There are no answers for the questions we have at this point.

We're going to discuss how Rob & I both having the MTHFR mutation affects us in the future, our children and any future children. Rob tested positive for one copy of the A mutation and I tested positive for two copies of the C mutation.

Dr. Google has provided some information, but has posed more questions than answers as far as I'm concerned. What prompted us to get tested? There have been studies published suggesting that a person who has a mutation of that gene can have children with Down syndrome and people with tetralogy of fallot, independently. And that can come from either the mother or father and have an effect.

In other words, if Rob was the only one with the mutation, our children would still have a greater chance of having those 2 things, as well as many others. Each different mutation of that gene (there are be 40 known) can bring with it different effects. Having one vs. two copies also brings different "risks" or effects. Having one copy of two different mutations can bring still other effects. At least these are the suggestions.

Anywho... Rob & I have a child who has Down syndrome and tetralogy of fallot. Because tetralogy is generally not associated with Down syndrome (not like AV Canal), it stands to reason (at least in my head) that our MTHFR mutations could have played a role.

And if that is the case.... I wanna know how it will affect my kids, my future kids and us going forward.

Sean had a gross motor/physical therapy evaluation. I was not happy with it AT ALL. It seemed that when E came in, she had some preconceived ideas of what Sean's capabilities were. And Sean seemed to pick up on something about her. He didn't respond well to her; as he has to every other person that has come here to either evaluate or play with him.

At one point she said 2 year olds have a hard time conceptualizing things and 2 seconds later put a yellow duct tape "thing" meant to be a balance beam down on my floor & expected him to know what to do with it. Um.... he has no idea what you're asking of him if you don't tell him. He won't attempt to walk on tape that is folded and everything else. He did walk next to it, but she was to busy chatting to pay attention.

She never asked me what he could do, whether I had witnessed things that he wasn't demonstrating for her like EVERY other evaluator before her has. She asked me whether I wanted to know about his functionality and seemed annoyed when I told her he functioned just fine.

Now... I do not have my head in the sand when it comes to Sean's abilities. I know Sean is "behind" typical kids his own age. I know he is immature in his speech and I know his coordination is lacking. He's also as stubborn as they come! My kid!? Never!?

So I calmly asked how "behind" he was. E asked, "compared to a 30 month old with Down syndrome or a typical 30 month old?" I explained that Sean is in a class with typical kids. He is the only child with Down syndrome. I want for Sean to strive and be expected to "fit in" with those kids as he gets older.

Many parents do not believe in that. And that's fine. Whatever works for you & your family. Please don't judge me that I want my kid to fit in with his typical peers. In much the same manner that I want Meredith to fit in.

She rated Sean at between 11 & 15 mos for gross motor and then gave us some ideas for helping him with stairs and jumping. Um.... I have never met an 11 month old that would be working on going up & down stairs upright on their feet. Which is what would be added to his IFSP as a goal. In fact at 15 months, Meredith wouldn't even so much as look at stairs to go up on her feet. So something doesn't add up there.

After discussing it with his service coordinator, Sean is getting a new evaluation. He will not be retested on things he did perform and that's fine, but come on.

Both kids are doing well in school. Thank goodness.

Meredith has reached a point where she's picking up on different things from different kids. It has been allowing a lot of conversation about what various words mean and how they can be hurtful. I don't wanna shield her from "bad" words. She's going to hear them. But I want her to know how they make people feel when they're spoken. And how the hurt people feel can never be taken back.

It started with her not wanting to goto dance class which is totally not like her at all. She wouldn't tell us why. Then the other day Meredith and Sean were playing in the kitchen with their new play kitchen and I heard Meredith ask, "What are you a moron?" I was caught so off guard I didn't know what to do. Especially since moron is not a word in my vocabulary. I will and do say a lot of things children should probably not hear, but that's not one of them.

When I called her over, I asked her where she'd heard it and she immediately started sobbing. It was futile to try to talk to her about it then. So I asked her if she knew what that word meant. She said, "no." I told her that it meant stupid or not smart and calling someone a moron was calling them stupid. I asked her if she would like if someone called her stupid or not smart. And she started to cry and said, "no. that it would make her feel bad."

She still wouldn't give up the info I wanted though. Was her teacher calling people morons? Was a child? When she was calmer, she explained that there was a little girl in her class that says "ugly things" and sometimes says them to Meredith. She said she's gotten in trouble by the teacher for saying them back. So I let Meredith know that she shouldn't say "ugly things" back to anyone. If someone is saying ugly things to her, she should get up & walk away. She should go play with someone else. If her teacher asks why, then she should tell her she doesn't have to listen to ugly words and be called ugly things.

I told her that her teacher would understand. And then I spoke with her teacher and let her know that Meredith wasn't being defiant if she got up and walked away from an activity and what I had told Meredith.

I'm actually happy that it allowed us an opportunity to talk about it. I want to give my kids the tools they need to actually handle situations that make them uncomfortable. I don't want to shield them from things they will inevitably have to deal with. And that includes people using words that will upset them.

Phew.... that was some update. I really have to be better about getting on here.

As usual, our new year is proving to be quite exciting already. And it's only going to get more exciting if we continue on this trend.