Friday, July 30, 2010

Sometimes I wonder...

...where Dylan has learned some of his silly behaviors.

And then Cassidy walks by and it all makes perfect sense...

Wednesday, July 28, 2010

I didn't need to know.

In answer to my own question,"Do I need to know?", when it came right down to it I decided that no, I don't.

After Dylan's evaluation was completed, his Early Intervention Team tallied up his scores, wrote them all down, and looked up at me. They asked me, "Do you want to know?". I said that no, I didn't. I fumbled and felt like I should somehow defend myself, but what I said and what I truly feel is that quite simply, it does not feel right to me. Whatever the reason(s) may be, it does not feel right. Maybe I am scared to know, maybe I'm in denial or maybe it's just the simple fact that comparing Dylan to children without Down syndrome does not make sense to me. Quite frankly, comparing Dylan to anyone other than Dylan does not make sense to me. So again, I said no thank you.

I was told again that once Dylan enters public school, I will not have a choice. That I will be told the scores and they will not "sugar coat them either". Whether or not that is true I honestly do not know, but whatever the case may be, I will cross that bridge when I come to it.

Since the evaluation, I have met with Dylan's Physical Therapist to come up with new goals for the next 6 months. He had met most of his previous goals, which is really nice to see. We love progress!!

As I've said before, Dylan is happy, healthy, motivated, curious, and observant. He is friendly and outgoing. He is loving. He is smart and he is loved. He is learning.

I don't need scores to know that...

Tuesday, July 27, 2010

New Skill for The Guy

Recently, Dylan has learned that he can pull up to stand

using the cushions on top of the couch.

This new skill

gives Mama roughly 50 heart attacks a day.

But seriously?

With a face like this, I have a feeling he'll be getting away with plenty of mischief in his life...

Monday, July 19, 2010

You'd think I'd be used to this by now.

These evaluations. Assessments.

Dylan's 2 year eval is on Wednesday and I'm anxious. Each time I think of it - butterflies. But why? Because he's 2 years old now? And his delays are becoming more and more apparent? Possibly. But I remember feeling nervous about his 1 year eval. And I'm sure for his 6 month one as well. I want him to do well, but yet I also don't care. Or rather I don't want to care because I know that in the big scheme of things, it does not matter. But yet... They told me that these scores will be sent to his future preschool. That they will be used to share important information with his future teacher.

They want to share his actual scores with me this time and I said I would think about it. I felt like they wanted me to say yes, as if I am in denial or something, but it's not that. They told me that once he's in school, there would not be a choice - whether I want to know or not, they are going to share it with me and in a not so gentle way, either. Oh, I just don't see how that information can in any way be beneficial for Dylan. Or for me. Will he walk sooner? Talk sooner? Place blocks one on top of the other sooner?

So then, what I don't get is - why the nerves? The butterflies? Sometimes I still worry that I am going to hear something that I don't want to hear... Maybe I am scared to hear it. Maybe it's different than what I think it is. Maybe, just maybe, it is a touch of denial, then. My own thoughts and guesses of "where Dylan is functioning at" don't count because they are just that - thoughts and guesses. They are not official, they are mine. I'm his mama and I am biased. Maybe I am too afraid to hear the words coming from someones else's mouth. Afraid to see the words in print. Words and numbers that would then become very real to me. Words that say that my son, this little boy who I love more than anything in this world, the one who in my eyes is amazing and wonderful and sharp as a tack, is, according to an official evaluation, actually functioning as a...what? 9 month old? 8? I don't think I can bear it, I really don't. Even though I know it does not change a darn thing, it may hurt. No, it will hurt. Badly. And I do not want to feel sad about Dylan...

Do I need to know? Do I need to know exactly how much of a delay there is?

Because my hope is that there are more important things in this life for Dylan. He is delayed, yes. But yet, he IS wonderful and amazing and sharp as a tack. He is friendly and silly. Cranky and loving. Happy and feisty. Sensitive and observant. And he is showing me, showing us, every single day a different side to this life. A different look at life. A perspective that reminds me, each and every day, to thank my lucky stars that I was given it...

So I wonder, do I need to know?

Wednesday, July 14, 2010

I have no idea what I am talking about.

Over the past couple of days, Dylan has made serious progress with FOOD. Real, real, food! I am still trying to figure out how or why this all just happened, and I am left with the belief that he simply was not ready before - and now apparently he is.

He has been eating (all gluten-free) breakfast bars, carrot muffins, bread with hummus, puffs, Berry Fiddlesticks. I have been adding crumbled up Baby Mum-Mums to all of his baby food as well to add texture. He's totally into it! Jar by jar, we're cutting back on baby food - finally!

This feeding success was accomplished without the help of an OT. Or any Early Intervention specialist. Yes, I used some of the ideas from our Feeding Team, but otherwise it was all Dylan.

So, it leaves me wondering lately about Early Intervention services. Shortly after Dylan was born, I was told time and time again (and agreed) that more is better. "Give him every opportunity you can to help him progress". Now, I just...I don't know. Things are changing and I just don't know if more necessarily is better anymore. I had wanted to cut back a bit this summer because we had been going full swing ever since Dylan came home from the NICU. Then, I wanted them all here and I wanted them here often. I felt like it was my job, as Dylan's mama and his advocate, to get as many services as I could so that he could start early. I didn't think there was a choice, and even if I did, I wouldn't have made a different one because I believed in what we were doing. I thought it was best. I didn't know...I didn't know how to help a little one with Down syndrome.

This morning, after we had taken some time off from EI to vacation at the cape, we had Speech Therapy. Cassidy. was. AWFUL. I mean, wow. And Dylan was tired and in no mood to do what he was suppose to do. I apologized for Cassidy's behavior and inside my stomach was churning. Oh, I did not miss this. His ST kept saying things like, "Don't worry, this is normal." and "Kids who have siblings with Special Needs sometimes have feelings that they can not quite figure out."... And I felt, as I have been lately, thoroughly confused. Confused with it all.

Cassidy has many activities that are special and are just for her - it's not at all like our lives revolve around Dylan because he has Down syndrome. But yet, I can't help but wonder if perhaps at times I am causing more stress, more chaos, more confusion - especially for Cassidy, by having EI here. Cassidy acts up, even when she is included. She knows that they are not here for her. I stress and worry and wonder what in the world they must think of us when they leave.

I believe that with Early Intervention, one of the most important pieces is the carryover. Dylan is not going to walk any sooner because he has PT for an hour once a week. I know that I must work on the things that they suggest - and for the most part, I do. I do. But sometimes, I don't want to. Sometimes I don't want to think about any of it. Sometimes I just want to pretend that we don't have to deal with delays and Early Intervention. Sometimes I just want to live our lives.

Sometimes...I get confused as to what I am doing and what is best. What is best for Dylan, for Cassidy, for me, for Dave. And I don't know the answer. I just know that I really don't like feeling the way that I did this morning after our Early Intervention session. As our ST drove away, I turned to Cassidy and said, "You know, that behavior was not OK Cass. Why did you do that?!". Cassidy started to cry, real, genuine tears, and said, "I'm sorry, Mommy.". I walked away because my own tears had started. I felt so guilty, so badly for her. But yet, we were heading out the door to her activity now - swimming lessons. She said, "Mommy. I'm trying to say that I'm sorry...". I hugged her because I believe that she is sorry. I know that it's not easy for her, but...

Sometimes, I just don't know.

Sunday, July 11, 2010


The outing started out innocently enough, as most outings do. It was a gorgeous day, beautiful view, cool newly discovered playground located right on the bank of the canal...

Ah, my little girl's sweet smile. Just look at how perfectly even her top front teeth are.

She asked me if she could ride "the goat" - it was one of those spring rider things. I'm pretty sure this one was actually a sea horse, but in any case

things got a little wild, they fell out of sync, Cass and the goat (seahorse?), and sure enough



She said, "My tongue keeps going up there and it feels weird.".


Now we call her Chippy. Or Chip, for short.

Thank goodness it's a baby tooth...

Saturday, July 10, 2010

Enjoying Cape Cod

We headed down to Cape Cod for a little vacation last week and lucked out with the most amazing weather! I'm pretty sure it was sunny each and every day we were there.

Cassidy and I enjoyed our morning walks to "The Pit" where we searched for crabs and sunk our feet into the "quishy sand".

We waded and then eventually swam in the ocean while trying to avoid the massive amounts of seaweed. It was so hot that we almost didn't care anymore when it wrapped itself around our legs and ankles.

I do not think that Cassidy stopped moving the entire time we were there, except for while sleeping at night. She awoke from the fireworks once, her first fireworks experience, and the look on her face was that of pure and complete happiness.

Dylan...he did what he does.

He was especially hot, so he rested when it all got to be too much. He observed his surroundings and soaked up life.

He smiled and waved at anyone who so much as glanced in his direction. Actually, come to think of it, he smiled and waved at those who weren't looking either...

When we returned home, I carried both sweaty kids up the basement steps. I plunked them down on the floor so I could begin the task of unpacking the car. Dylan's face lit up as he began to recognize where we were. They hadn't seen their toys in a while, so everything was exciting again. They both began emptying out the toy baskets and Cassidy turned to me and said, "Awww! Our house! I missed it!"...

We are back full swing now, and are settling into a little routine again. Oh how I love going away. And the coming home sometimes is even better...