Snow in October?

After a late night last night out being adults, we woke up to the first Nor'easter of the season. Fun fun. I am not prepared for winter yet. Isn't it still autumn? We have been assured that this winter won't be nearly as bad as last winter. There aren't any acorns to speak of on the ground and apparently the caterpillars are mostly brown. I learned last weekend that when the caterpillars are mostly black, it will be a bad winter. They were almost all black last winter.  This year they're more brown.






We didn't venture out, but we did let the snow flakes land on our hands while Seany took a nap.

Sean does the Wheels On The Bus

Is he cute or what!?

Perfect doesn't just happen. Perfect becomes.

I wrote the title to this post a few weeks ago. I didn't really know what it meant or why it struck me, but something spoke to me & said "write that down. It means something." It kind of reminds me of a fortune cookie from the chinese restaurant. One of those sayings that until it relates directly to you, means nothing at all.

And all at once.... Like a wind that takes your breath away in a gust...... It meant something!!! It meant figuring it out. Life transforms with each & every turn and becomes perfect.

When you see that the new physical therapist has your son standing unassisted while being "pushed" around. Life is becoming closer to perfect.







Or when you realize that the dog that takes the worst beating from your youngest child, takes it because she loves him....... Your life is getting closer to perfection.



But the most inspiring way to know your life is getting closer to perfection? You look to see the same kids you swore would be mortal enemies wrestling & giggling to the point of giggle exhaustion.











I'd say that right now.... my life is pretty close to perfection.

A date with a genetic counselor

Yesterday we hosted a future genetic counselor who is graduate student at Sarah Lawrence College. A woman who has a child with down syndrome worked with someone at the college to pair students with families who have someone with down syndrome in their immediate family. Most of us are families with young children. 

The purpose was so the student could live a day in the life with us and hopefully take away the fact that we're raising children. Not freaks of nature. 

Olivia came & she was lovely. I picked her up at the train station and came back to our house to feed Sean lunch, finish getting our stuff ready to go & then head to the zoo. Right from the start she got to see that we are "normal". I got both kids out of the car & both of them up 3 flights of stairs. I swear I do this multiple times a day. Up & down. Up & down. You'd think I would be BEEFCAKE!!! by now, but sadly.... I'm not. 

Anyway, she watched me wrangle Sean to eat, including pulling him by the back of his pants to slide him back to me. Try as he might to get anywhere, but near the food...... I won & he eventually finished eating. Then we were off! 

We went to the Staten Island Zoo . Even though I like the Prospect Park Zoo  better, there is no parking dedicated to the zoo and the trains were running funny. The zoo is cute. They have a petting zoo with goats & llamas and a few exhibits. 

 

Do you see the drama llama being all dramatic? Apparently I offended him. So he turned his back to me.

It was pretty busy and it seemed like most of the people there were lacking in manners. Oh well..... The kids didn't seem to mind. 

Meredith took to Olivia like no one's business. To bad she doesn't live closer to us. I might have had a new babysitter. Ok well I might have had one if she had wanted to be one. 

Meredith even allowed Olivia to get her into trouble :) Ok.... what would've been trouble if she'd gotten caught. 

Seany had an awesome time too. He even got his little fingers nipped by hungry chickens. Poor kid. 

 

As we walked through the zoo she asked some questions about our lives. I hope that what came through was that even though life is hard at times and down syndrome isn't all rainbows & puppy dogs, our lives are normal. I'm still shuttling both kids to something. Their schedules read like a football play book with lots of lines, X's & O's. 

I hope she takes away that like EVERY other family, we get on each other's nerves, but we always love each other. And that we find a way to make it all work. 

Olivia is going to make a great genetic counselor. She's warm & personable. She really listens and relates. I reassured Olivia that this is a typical day for us. When plans don't pan out (we were supposed to play on the beach), we pick up & head somewhere else. I pack them up & we go! 

After the zoo I invited Olivia to have dinner with us at Rob's parents' house. It was a long way back home for her. So she declined. But here are some pictures to see what you missed, Olivia. More of Seany walking, daddy & daughter reuniting. And of course..... there was me forgetting my cell phone & camera there in the rush to get the cranky kids home to goto bed. 

 

And of course you missed the view from the balcony.

I promise you, Olivia. You are more than welcome to come play with us any time. Thank you for caring enough to ask the questions and "live" a little while with us so you can better counsel your future patients. 

Early Intervention & Therapy Updates

I thought by now navigating the red tape that is early intervention would get easier. Ok well I thought that I had found a good agency for therapy providers and a good agency with a good service provider. Got that? All of our therapists came from one agency, Thursdays Child, and our service coordination came from Marathon.

As the months went on & more things needed to be dealt with, I found that I was doing a lot of the legwork in figuring out who was doing what & when. At one point my coordinator was even having me chase down therapists for annual assessments. That was just little tidbit. There were many many other things. Thursdays Child's administration became increasing disorganized. And suffering through it all with lack of therapists and wasted time was Sean.

So instead of trying to figure out who wasn't doing their job, I decided everyone needed to go. Both agencies would have to be "fired" from Sean's case. We started with our service coordinator. I started calling around. Some things I needed were to know that my service coordinator would actually coordinate. I also wanted a coordinator\agency that was willing to sit & talk for a minute to tell me about their agency, about how they would coordinate, etc. If the coordinator just assumed I would be joining their agency, I kept searching.

I called Kidcare. I was immediately transferred to Stephanie and when I told her all we had been dealing with, she was as bewildered as I was. We decided to sign with her and so far, it has been a good choice. Our speech therapist was already signed on as a provider for Kidcare so she just moved on over with us. We felt that it was good because we like her and it's good for Sean for Rosie to continue on as his speech therapist. Especially since Seany's saying so many new things. We didn't wanna put a damper on Sean's spoken word.

Sean's new vocabulary includes:

Alligator

Momma

Daddy

Doggy

Cat

Yeah

Ight deah (right there)

Up

And a whole lot of babbling

We hired a new special instructor. We're just waiting for her to be approved as a provider with Kidcare. We're still waiting on finding a occupational therapist, but Stephanie found us a new physical therapist.  Ahmed started today. We loved Erin & we loved the way she practiced. One thing I didn't love was her constant push that Sean HAD to crawl. She always wanted to work on the crawling no matter how much I said that I didn't think Sean would crawl. I think that he's just going to go straight to walking.

Well.... when Ahmed got here, he immediately started working with Sean as he spoke with me. He asked what my concerns were, what Erin had been working on, etc. He did a full assessment of Sean's muscle groups. He manipulated his arms, legs, shoulders, knees, etc. All the while telling me his "findings". He did not feel that Sean has any muscle tone issues. He said that Sean was very strong (insert pat on my back here). He watched Sean sit & transition from sitting to belly & back again (thank you Erin).

His assessment was that Sean has motor planning problems. We knew that. That has always been his issue. Once Sean is shown the steps to accomplish a task, he does it. He said that Sean probably won't crawl. I was floored! How awesome that without any prompting, Ahmed feels the same way we do? He said that most kids with down syndrome ( and yes he used people first language) walk around 24 mos old, but he thinks Sean will walk earlier than that. Now I know not to get my hopes up because we were told the same thing about crawling, but I feel encouraged. He feels Sean's lax ligaments will tighten as he gets older.

During the session, Ahmed showed me how to help Sean cruise furniture and Sean cruised my couch 5 times. He made Sean stand in the middle of the living room and he stood. Unassisted!! Ahmed feels Sean's balance is good, but he has issues with getting into a good position. Hence the motor planning issue. Ahmed poked and pushed Sean gently in the shoulders while he was standing and Sean stayed standing. He did start to get a little very annoyed, but Sean knows what he likes & doesn't like. He doesn't like being pushed out of his comfort zone. Everyone knows that.

Sean has been walking assisted for about 1.5 weeks, but he's always wanted\needed me to hold him under his armpits. He's always pushed my hands away when I have tried to help him walk that way. I'm not sure if it was because he wanted\needed the extra support of what, but today he was more than willing to allow me to hold his hands in that all to cute baby learns to walk way.

I'm so excited. I feel like we are finally moving forward. I feel like we may finally have the perfect team falling into place to really help Sean gain all he can from Early Intervention while he's still with them.

Check out the awesomeness that is Sean





 

Great Grandparents

Instead of going to the aquarium like we planned..... we got an invitation to lunch with my grandparents. It turned out to be just what the dr ordered. The kids & I enjoyed our visit and we enjoyed lunch.

Meredith learned that playing with various kinds of sugar was buckets of fun and Sean showed off some skills.