Our teacher

Nine months and two days ago, Dylan Ross came into this world.

We did not know he has Down syndrome.

Four months and eight days after he was born, he went through major open heart surgery.

We did not know that the surgical team would discover an additional, and extremely rare heart defect, which would also need repair.

And today. Dylan is...Dylan. He is so many things. He is happy. He is loving. He is learning and is thriving. He is living a wonderful life.

We did not know that this kind of love was possible.

I don't know

Ugh. I am feeling pretty discouraged right now. I am basically resigned to the fact that I do not know how to help Dylan learn to sit. He is so resistant about it. I don't know if it's because of his reflux or if he just doesn't like to be in that position. Every time I try to bend his body into a sitting position, he becomes completely rigid. I can barely bend him. It appears that he is uncomfortable, so obviously I do not want to force the issue, it's just...ugh. It's just really frustrating at the moment. I already feel guilty about not working with him enough and now it's doubly frustrating because when I do try to work with him, we get nothing accomplished. I don't know what to do. Here's that "f" word again. The word that Lisa was talking about. One that I can relate to well...I feel like I am totally failing him.

I know, I know. I know what you are probably thinking: 'This is sitting we are talking about. It's not the end of the world. He will reach his milestones when he is ready.' I hear you and I feel that way as well, but...it's just...it's just one of those things that I feel like I should be able to help him with and I can't. It's a reminder of how much more difficult things will be for Dylan. And for me...because at times like these, I realize that I don't know what I'm doing. I don't know how to do this Down syndrome stuff. And it's breaking my heart.

Does anyone out there have any experience with such sitting woes? Any ideas on how I can best work wit Dylan on this?

As always, thank you.

Could it be?

Spring?!

Is that really you?!

Woohooo!

A Lot

We went to our first Down syndrome conference this weekend. To my surprise, it was a day filled with many different emotions. Excitement, connectedness (is that even a word?), worry, acceptance, fear, love. As a matter of fact, it's been 2 days and I think I am still trying to get myself back on track.

Our first session was for new parents. We met Dr. Allen Crocker as well as a couple of other well known women in this area, who also have children with Ds. They spoke about various issues, told stories, and then welcomed questions from the new parents. It was amazing...the connection I felt with all of these people. Even though I did not recognize their faces, even though I did not know them, I know they have walked our walk. Everyone sitting there, in that room...they know. They know what it is like. I kept looking around the room. There were so many babies in there. All with Down syndrome. And their parents. Ah. It was amazing.

The next session we went to was called: "Medical Issues In Children with Down syndrome". Need I say more? Ugh. You know, originally I had thought it would be important for us to gain more knowledge about the possible issues we may be faced with down the line. Um. Well. Maybe so, but it was certainly not the best idea for a worrier like myself to sit through a session like that. Sheesh. I left that session feeling anxious. And paranoid. Every move that Dylan makes now I wonder...hm, autism? Could it be? Please don't let it be that. So, yeah. That session was blech. I told Dave it was WTMI, in which he responded, "What the heck is WTMI?". Wayyyyy too much information, my friend. Way too much, indeed.

We attended a luncheon in which the keynote speaker was a 20 something year old girl with Down syndrome. She made a beautiful speech about her life and her dreams. At some point during her speech, it hit me, yet again, like a ton of bricks. Dylan has Down syndrome. Dylan is going to be a 20 something year old with Down syndrome. Sounds odd, doesn't it? Here I am, at a Down syndrome conference, and it took me until about lunch to fully grasp the fact that my baby, who has Down syndrome, will grow up to be a 20 year old with Down syndrome.

Dave went to the last session about financial planning while I decided to blow it off. By this point Dylan was getting tired as was I. In between my yawns, my mind raced with thoughts. Thoughts about Down syndrome. I spent the last hour or so with my new friend, Michelle, and her little guy, Aaron. We walked up and down the halls trying to process this Down syndrome stuff and what it may mean for our sons.

I am glad that we decided to go. I mean, it was a lot. It was a very heavy day, but a day that was necessary. Another step forward for us in this journey, I think.

Have you seen this?

I just saw this on Daniel Drinker's blog. It is a clip from The Tonight Show with Barack Obama. I am speechless, honestly. Our own president making a jab at The Special Olympics? Nice example, eh?

:Sigh:

love

It is times like these...


...that remind me...

...yet again...

...how truly blessed we are.

This is love.

New Friends

A while back, I posted this about a woman who lives in my city, is also a teacher, and also has a little boy with Ds the same age as Dylan...

We have since talked on the phone a few times and were able to meet up yesterday! She and her husband, along with little Aaron, came over to our house for a few hours. We talked, sat on the floor and played with the little ones, talked some more, munched on some quiche and fruit. Dave was instantly won over once the connection was made that Aaron's daddy is also a Grateful Dead fan. Need I say more?

Honestly, it felt as if we were old friends. Like we had always known each other.

It's funny...I am just beyond excited to have connected with someone "in real life" who is going through what we all are. BUT, let me also say this - for those of you who read this blog and take the time to comment - I hope you all know that I love you to bits and would be utterly isolated and lost without your wonderful advice, suggestions, and words of wisdom. It was just different...actually seeing another baby, in the flesh, with Down syndrome! Is that weird? I don't know how to describe it. It was as if all of a sudden I did not feel alone. I felt connected. Understood. Hopeful. I felt so excited for Dylan to have a brand new special little buddy. Someone to travel through school with. Someone who will relate.

There is going to be a Down syndrome conference here in Massachusetts next weekend as well that we will all be going to.

See...little by little, we are getting there. Which sounds strange because I still don't quite know where "there" is. Is it acceptance? Hope? Peace? I don't know. But I can feel it's presence. More so now than before.

Baby steps...

Communication Question

Is it a given that Dylan will have difficulties with speech?

I just started reading, "Early Communication Skills for Children with Down Syndrome" by Libby Kumin and now I'm feeling a tad...overwhelmed. And discouraged. And I'm only on page 23.

In this book, there is a list of 28 different physical differences that affect speech and language in people with Ds. These differences range from low tone in mouth, tongue, and pharynx muscles (there's that stinkin' low tone stuff again!) to difficulties with coordination, accuracy, and timing of mouth movements.

And those are only the "physical" differences. It then goes into a zillion other reasons why people with Ds have communication problems.

Does this mean that I should expect difficulties? I should assume we will have them? Seems like it to me, which is why I've been feeling some additional stress lately. At the end of the chapter it says, "Although the long list of communication problems that children with Down syndrome might have may seem daunting, much can be done to help overcome or alleviate the problems." Much can be done. Sounds good, semi-hopeful I guess, but...you know...sometimes I already feel like our plate is pretty full with challenges. As it is, I feel terribly guilty when I'm not able to find enough time during the day to work on Dylan's strengthening exercises. I try. But some days it seems like the day gets swallowed up with many feedings, with sitting up after each feeding for 40 minutes as to prevent major spit-up issues, napping, errands etc. And now I must find more time to "involve my child in activities and experiences that will help him overcome difficulties in many areas". Do I already do that? If so, am I doing enough to help him overcome these difficulties? I don't think so. Thus, the stress. And additional guilt.

Oh, I don't know. I've just been feeling pressure lately. Of course it's pressure that I've put upon myself, but it's there nonetheless. Some days I feel as though time that is not spent helping Dylan work on strength and communication is time that is wasted. I know that's not totally true and please believe me when I say that we have our fair share of silly times. Drill Sergeant I am not. It's just that I hate having this guilty, naggy, selfish feeling whenever I put Dylan down in ::gasp:: his bouncy chair. I know that the bouncy chair does not "help" Dylan in any way, shape or form. But every now and then I just need to put the little guy down. I need to put him down without thinking of how this particular placement is going to affect his muscles.

Hm, that got a bit side-tracked now, didn't it?

So, back to my original question. Does everyone with Down syndrome have difficulties with speech and communication? Any thoughts or advice on this?

Awareness

Have you seen this yet?

If not, we are asking that you please take a few minutes to check out this site. Get yourself educated so that you may educate others.

See, our hopes and dreams for Dylan include acceptance. Include love. We expect Dylan to respect others, and in return, to be respected. We feel that just like every other child in this world, he deserves no less.

Don't you?

Thoughts for Avery

As many of you already know, today is the day for Avery's heart surgery. Avery is Jennifer Graf Groneberg's son. Jennifer is also the author of Road Map to Holland. I have mentioned her in this blog many times as she is a person whom I truly admire. I began reading her book shortly after Dylan came home from the NICU and I believe, without a doubt, that her words helped to set the scene for how my life with Dylan began.
My stomach has been in knots today just thinking about what she and her family are going through. It's amazing how all of this brings me right back to the days of Dylan's heart surgery.
Please keep Avery, Jennifer, and their entire family in your thoughts, if you could.

Snow. Yeah.

Hmm...I just want to make sure my calendar is correct. It is almost mid-March, right? 'Cause here is the view outside of our back deck as we speak. I'm pretty sure I requested no more snow, didn't I? Grr.



Even though I am absolutely, positively, completely OVER THIS WINTER (have I mentioned this enough times?!), Cassidy is still just as fascinated by the snow as she was months ago.

The other day, while Dylan napped happily in his nice warm crib, Cass and I ventured outside and made a little snow family. Here's Cass with Frosty and Frosty's baby, Frosty. The mama snow lady got knocked over, but her name was also...Frosty.

You know...what is extra frustrating about this newest snow storm is that this weekend was soooo spring-like! The snow had all melted (including our snow family which didn't go over very well with Cassidy), we were outside without jackets, we had talked of swing-sets and beach chairs. Sigh. Apparently we were getting a lit-tle bit ahead of ourselves.

Well, I'm off to go watch a dvd with Cassidy. Frosty naturally.

Successes

One of Dylan's goals for the next 6 months is to be able to sit independently. Courtney, D's OT, has been showing me different ways in which I can work with him on strengthening his muscles and improving his sitting skills. It's been difficult lately, though, as it seems like whenever I try to work with him on sitting, he gets into that super rigid mode where I can barely even bend his little body into the sitting position let alone try to get him to do it with minimal support.

There is one way, though, that I have found to be somewhat successful. If he's in the mood, I will sit Dylan on the floor with a pillow in front of him (as well as in back - I don't trust the little guy to not fling himself backwards quite yet). I place the pillow on top of his legs so that he is able to slightly lean on it. I also put a toy on top of the pillow to keep his interest as well as to distract him from the realization that he's sitting, as that tends to send him into said flingingness.

Today he sat long enough for me to snap a few pictures. I would say that his total sitting time was about 3 maybe 4 seconds before he flung himself backwards. But still! It's a start, right?

Another exciting success today was achieved by Dylan's big sister, Cassidy.

She received her first sticker on her potty chart! We were playing this morning and all of a sudden I noticed that she had "that look". I asked her very nonchalantly if she wanted to sit on the potty. I fully expected the usual, "NO! NO! I don't want to sit on the potty. NO!". But instead she looked as me and said, "Yes." I put her on and...well...success! Yeah Cass!

And I was finally quick enough to catch some footage of Dylan rolling from his back to his belly!

Whew. It was quite the exciting day around here I tell you!!

Spriiiing? Where are you?

I don't know how much more snow we can take. I mean, really. Enough already. Right?!

I'm afraid that we are aboutthisclose to suffering from some serious cabin fever. And for the sake of my own sanity, I succumbed to Cassidy's "strong will" and lost the potty battle. I just don't see it happening right now. At least not on my terms, it isn't going to.

Sigh.

I think even Dylan Ross is feeling the blah-ti-blahs.

Today, after hearing that we should expect about 15 inches of snow, we didn't even bother getting out of our jammies.

C'mon spring! Help me out here. We need you!