Miles Points and Sits

Okay, it's been a while since I get a chance to sit and write, but that's good cause it means I've been working. And things have been hectic, but we're hanging in there, still finding time to laugh about the hard times!

There are two very cool updates I want to share about Miles.
1. He's starting to use his pointer finger.
2. He can sit in his chair for like 10 minutes at a time while I read books to him.

Let me explain why these two things are so cool. As opposed to most typical children who are usually finger feeding, pinching, and grabbing small things with their fingers by the time they're 9 months, give or take a few, our kids have a tough time with that. Those are fine motor skills which are not easy for them to achieve. Miles has been using his thumb to point at things or to touch things for the last 3-4. He is not able to pinch or grasp small objects using his pointer ("grooming" finger) or middle fingers. His motor skills are still too rough so he continues to rake objects, like much younger kids do.

We've been working on grabbing small objects with his thumb and pointer for what feels like months! And finally, out of nowhere in the past 3 days I have seen him point at pictures in books with his pointer finger! I saw him playing his little piano and touching different textures with his pointer!! So the ability to isolate that pointer is finally emerging and from there will come the other fingers and the fine motor skills needed to control them and grasp the little objects, like a cheerio or a piece of egg, and feed himself!! It might still take a few months to see that, but there has been some progress and it is very exciting!

As for seeing him sit in his little chair and focus his attention for 10 minutes is also amazing for 2 reasons. Due to Miles' low muscle tone, his mid-body (or trunk/abs) is not very strong and it takes a lot of effort for him to balance sitting. Also, now that he's been doing the "worm crawl" as we call it, he knows how to get to his toys and all he wants to do is play all day long. So getting his attention for more than a few minutes to sit focused on a specific activity that I've created, while having him balance sitting in a chair is very difficult. But he's doing it!
In fact, these days, when I want him to focus on an activity, I sit him in the chair and he'll focus.

This evening I sat him in his chair and read him different parts of The Enchanted World of Winnie The Pooh and Miles sat there for a good ten minutes, completely enthralled. He was ready to keep going, but it was bath time and I was sufficiently happy that he focused when I asked him too.

It might not seem like much, but trust me, it's huge!

Therapy is Hard on Both of Us

Miles cried a lot last week during his Occupational Therapy. The therapist was pushing him very hard and he didn't want to do the work. It was excruciating for me to sit through the therapy and watch him cry. He would look at me with those beautiful eyes full of agony, wanting me to scoop him up and take him away from the pain. But I couldn't. I can't. That won't do him any good. And though it killed me inside I had to be strong and remind myself that this is for his own good. He needs to learn to have endurance, to work hard and to self soothe because out there in the real world, he won't always have me around to comfort him. It broke my heart and I had to walk away before I started crying out of pain for my baby.

There are going to be many moments like this in our future, but I have a sneaking suspicion that the majority of our moments will be filled with laughter. High pitched, open-mouthed, fun filled laughter!

Happy Birthday Miles

That's right, my little baby is now a One Year Old Toddler! In some ways, it seems like time flew by, like it was just yesterday that I was still pregnant and waiting to meet my child. But when I really look back on all that has happened in the last year, physically and emotionally, it does feel like a whole year has passed. It feels like a century has passed!

One year ago, my heart ached so much for the baby I wanted to have and didn't get. I felt like the Universe had betrayed me and I would never feel happiness again. Now I feel happiness every time I look at my Miles and I feel completely blessed by his presence in my life. The Universe did not betray me, instead I can clearly see the path that led me to this moment and how prepared I was to deal with it.

One year ago Miles lay next to me, barely opening his eyes or making any sound, his skinny little legs and soft mushy body seemed to fragile. It took him months to gain strength in his neck and to move around at all. We could put him down on his side or back and he would not change positions for hours. Now, this little dude can't be contained!

Though he is still not crawling, he is doing "the worm" at lightning speed. In the last week, since he turned One, he is finally changing positions with ease. He can go from prone (on his belly) to sitting up and back to prone in seconds. Although he is still soft and cuddly, he has so much more strength in his spine and torso. When I hold him, he fidgets around like other kids his age and I can feel him using his muscles. But the most amazing new development since Miles turned One is that we had to put his crib mattress down! That's right, little man has managed to pull himself up on his crib a few times now! He can't sustain it though, so he ends up falling backward and getting his neck stuck on the bar. Not a good thing....so we moved the mattress down.

Miles is also very busy and curious. He loves playing with anything! Balloons are a new favorite and he can sit for a half hour pulling on a string with a balloon at the end of it. He'll crawl around the office knocking down garbage cans, into the kitchen where he bangs on the cabinet doors (he hasn't figured out how to open them yet), into the dining room where he plays with the rug. He'll sit in front of a mirror and excitedly yell at his reflection. He eats just about any food, seems comfortable with most people in any situation, and loves watching older kids. He no longer hits the guitar but gently strums it.

Miles knows that I am his mom and Zach is his dad. He gets excited to see us and comes towards us so we can hold him. He understands when we are mad at him and he knows how to get what he wants. I mean, I could go on and on and on. The reality is that so much has happened in the last year and these are just some developmental milestones!

These are all things I didn't know if he would ever do! I was so afraid a year ago. I didn't know what to expect and talking to other people usually made it worse because they didn't know what to expect either. So far, Miles has shown me that he is bright and strong, resilient and curious, good-natured and stubborn. It can take him a while to learn something, but once he gets it, he doesn't forget. And he doesn't give up.

Every day of my life with Miles is filled with wonder, magic and joy....sprinkled with exhaustion, frustration and guilt. But that's life and it ain't so bad. In fact it's great.

Happy One Year Birthday my boy!!! I look forward to this new year of life with you!

Looking for Moms

Lately I've been feeling like I need to start reaching out more to the Down syndrome community. More specifically, I feel like I need to find another new mom, like myself, going through what I'm going through. I've met some wonderful parents of teenagers and adults with Down syndrome and I've met a few new parents of babies with D.S.....but none that I've really clicked with. Because having babies with DS gives us something in common, but it doesn't mean we're gonna want to be friends.

I have this wonderful group of mothers that I've become very close with in the last 8 months. We have supported each other through all the scary, daunting and exciting tasks of caring for our newborns. Most of the babies in the group are now crawling, finger feeding and understanding the difference between right and wrong. Though all these mothers have typical babies, they have nurtured and supported me and accepted Miles wholeheartedly and I cherish the little village we've created. But at the same time, it would be amazing to find a group of women like these who like me, have babies with Down syndrome. Where we can discuss our specific challenges and fears freely, give each other ideas and recommendations.

So far, the people and groups that I've come across want to talk about the Regional Centers and the budget cuts and how terrible the system is. They are angry about the unfairness of the system and the lack of help and how hard they have to fight to get what their children deserve. All of this is true and based on real experiences. I have already come across my own hardships dealing with my Regional Center and trying to get Miles the appropriate therapy paid for by the state. I've already had to fight for him and I know there will be plenty more fights where that came from. And I ain't no Lillypad. I am a Lioness and I will get my son what he deserves. But that's not what I want to talk about when I meet new parents.

I don't want to dwell on the negative and turn my son into a diagnosis. He is not a "Down's kid", as many people might refer to him. He is a baby. A human being and he's got a very unique personality. And that's what I want to focus on. I want to focus on who he is and how I continue discovering and nurturing who he is.

Sometimes I feel like I live in this little bubble world because I have surrounded myself with wonderful people who love Miles no matter what. And I forget that he has Down syndrome. I don't see it because I see him. And that is who I want to see. But I also feel like he would really benefit from having a little friend who is like him, who he could maybe connect with on a different level. And for me, it would be so beneficial to have a mom friend who is experiencing the same thing I am at this moment. There are several women I can call who have gone through this for the last 13, 16 and 20 years who can give me some very wise advice. But they are in a different place. Their children are no longer babies. Their pain and fears have evolved and changed through the years. And that informs who they are now, as time will inform me.

As we get closer and closer to Miles' first birthday all these feelings keep coming up. Fears and doubts about his future, our future. I keep reminding myself to experience these moments and enjoy them. Enjoy the happy little baby I have because soon enough he will be an adult and our lives will be so different. Yet it will all be okay for I am growing at the same rate in which Miles is growing and my mind, with all its questions and doubts, will have caught up to my heart and soul, who know everything will be all right.

One step at a time, right?
My next step? Find some cool moms who have babies with Down syndrome. Maybe start my own group. Who knows....Maybe.....

Smile, it ain't so bad.

I'm feeling very emotional these days. I suppose it's because Miles' First Birthday is coming up on September 1st. This morning I woke up and the soles of my feet hurt, the way they used to when I was pregnant. I sat in bed thinking how different things were just a year ago at this same time. I was incredibly pregnant and would wake up in pain every morning. My feet and hands were swollen, I had arthritic pain in my hands so intense I couldn't make a fist, my lower back was killing me, I was overheated, tired and couldn't wait to get the pregnancy over with! And just ten days later, my life changed more drastically than I could have ever imagined.

It's all so bittersweet I suppose. The happiest and saddest moments of my life all rolled up in the same memories. It's hard to separate the feelings and as we get closer to Miles' birthday, I can feel them all creeping back into the surface.

I feel like I've done a decent job of coping this year. The first six months of Miles' life where so difficult for me. I couldn't see an end to my sadness, but then we went to Australia to visit my sister, brother-in-law and niece, and I realized that all would be fine. I felt such freedom traveling, something Zach and I have always done together. People had told us that it would be difficult to travel with Miles because children with Down syndrome don't do well traveling. Well, Miles is our child and traveling will always be a part of our lives and I have a feeling he'll love it, just like we do. He did wonderfully in Australia and made some huge leaps during the trip. He started eating and rolling and got more curious about his surroundings. In fact, every trip we've taken has helped him reach a milestone. It's awesome.

So we returned to LA and I made a renewed attempt to get out more, start working again and summon happiness back into my life. I can't say it's been easy, but every month it gets better and better. And it doesn't hurt that Miles is doing incredibly well. This morning he finally sat up on his own!!!!! This is a huge thing for us! Though he's been "combat crawling" or more accurately "doing the worm" for almost two months now, he still hasn't been able to go from his belly to sitting position. We practice and practice and practice and low and behold, this morning when I went to get him in his crib, he was sitting up!!! Zach was taking a shower and I ran in to tell him the good news! My heart is exploding with joy right now!

About an hour later, we actually saw him sit up while we were all in the kitchen preparing breakfast. Zach and I smiled and clapped in reinforcement and Miles smiled shyly, knowing he'd done something good. So cute!

He's also getting better motor control in his hands. He is able to grab the spoon with his hands and get it into his mouth almost every time now. And most of all, he is showing his independence and stubborness. He wants to do things when he wants to do them and in his own way. Yes, he reminds me very much of myself. Yes Mami, it's payback time. I know!

It's getting more interesting by the day and I know I'm in for some tough battles in the future. I just gotta remember to retain my humor through it all!

Miles is bringing me so much joy these days! Even though he's been acting like a crazy baby, he's just so scrumptious. Why is he a crazy baby you may ask? Because he's been teething and that makes him go through a whole range of emotions in just minutes. He'll be laughing happily with me one minute and then he'll arch his back and yell and scream in anger. I didn't do anything! What are you yelling about? Then he'll drop it all and start drooling all over a ball as he tries to maneuver into his mouth, which is simply impossible since he's got a tiny little mouth!
It's actually pretty funny and though it's frustrating when I'm trying to change his diaper or give him a bath, mostly it makes me laugh.

These days he's also enjoying exploring the world he lives in. Now that he's mobile (ie. he scoots and crawls on his hands, still not using his feet much) the world has opened up. He sees us cooking in the kitchen and he will wiggle worm his way in there from the office. The washing machine is banging and it calls his attention, well, now he can wiggle his way into laundry and see how it works up close and personal. He is getting very interested in wheels and will wiggle his way to the stroller or the office chair or any other piece of furniture that has wheels.

And he's starting to really engage with me more. He just started handing me things. If he's playing with the spoon or a cup or a ball and I'm sitting in front of him, he'll hand it to me! Sure all kids do that sooner or later...but it just started happening to me, so I am delighted and surprised! The other day after one of his therapy sessions, I was sitting behind him and he actually turned all the way around and tried to crawl over to me with his arms out! He wanted me to hold him! Of course, he still can't quite go from sitting to prone position (on his tummy), so he ended up belly flopping instead, but it was so sweet! It was the first time that he actively tried to reach me like that. I felt so wanted and so loved and so happy to know that he gets it. He knows I'm his mama (or maybe he just knows I give him food), but regardless, it was a wonderful feeling. So I am on cloud nine and enjoying all the loveable, huggable, yumminess that is my Miles!

A Life of His Own

Before Miles was born I thought a lot about the fact that our child wouldn't just be ours, but that he belonged to the Universe. That our job was to give him the tools so he could one day go forth and make his own way in life, without us. When he was born and we were told he had Down syndrome one of the thoughts I had was, "Our child will never be able to go forth and have a life of his own". I was scared and knew no better. But really, I was wrong to think that he wouldn't have a life of his own!

Miles already has a whole personal life that we're not a part of! See, he's been in daycare twice a week for almost 3 months now and he is the little Casanova in the motley crew of kids he plays with all day. In the beginning, I was so afraid of leaving him there, would he miss me? would he cry? would they know how to care for him properly? would he get along with the other kids? I second guessed myself so much, but after a couple of days, I realized that being around all those "typical" children was actually really good for his social skills and his play skills. But it never even occurred to me that he'd make friends. And not just that he'd play with the kids there, but that they would look forward to seeing him!

Believe it or not, Miles has two lovely little ladies, Scarlet (who is 2 years old) and Beatrice (a year and a half), who start yelling his name in excitement when he arrives in the morning and who start crying when I pick him up in the afternoon. "Baby Miles!" they for call him. They give him kisses and sing songs with him. They're teaching him how to clap and they practice crawling with him! There's also several boys who all love to play with Baby Miles.

So here he is, less than a year old and already he has a life of his own, that my husband and I are not a part of. Sure, he might have a tough time when he's in middle school or high school, he might even live with us forever, but he will always have his own life. With his own friends. And Scarlet and Beatrice are probably just the first of many many women in his life who will look after him. And for that, I say he is mighty lucky!