Miles rocks out

Floppy Ain't So Bad At All

Miles is floppy. Well okay, the word is hypotonia. He has low muscle tone. That's the reality for people Down syndrome. That's why he has to do occupational and physical therapies, to help strengthen all the muscles in his body, including his tongue. That's why babies with Ds take longer to hold their head up, sit up, roll over, crawl, walk. It involves every single muscle, so it's also why Miles has poor control of his fingers and hands, his mouth, etc. Most of his therapeutic work right now is focused on strengthening his core. The stronger his core, the more solid and confident he will be to perform any task.

It's sad and inconvenient that Miles has to work so hard to strengthen his body when other kids just have that strength naturally. But I think there's a big upside to hypotonia: it makes Miles really cuddly. At 19 months I can still hold him and he feels like a warm, yummy, cuddly little baby. You know how parents are always like, "I wish my kid didn't grow up so fast?".....Well, I feel like that doesn't quite pertain to us. Miles is growing at a slower rate, so I actually have to slow my mind down to be at his speed. And it's good. When he's ready to make a big developmental jump forward, I'm ready for it too. And since he's my only baby, I don't know any better. I'm used to how soft and floppy his body is and I forget that's not the way it's supposed to feel. When I hold someone elses baby I am amazed at how strong they can be at such an early age. Then I get it, and the difference is plain and simple.
I mean yes, all my friends' kids are walking and Miles isn't. I'm okay with that, I know he'll do it sooner or later. What amazes me is when I see other kids move their bodies in ways that Miles isn't even aware that he can do. It's the little things that catch me off guard.

Miles and I were hanging out with some friends today and I saw one of them roll around on the floor, just for fun! She would roll over about 4 or 5 times in one direction then turn around and do it the other way. I've never seen Miles even attempt to do that. I don't think he knows that his body can do that. Recently, I also babysat my friend's ten month old baby and he started pinching me when I held him. Pinching me with such strength that it actually hurt. Miles' fingers do not have such strength. He's never pinched me. Once day he'll do it, but at 19 months, he still can't.

Any time I hold a typical baby I am reminded of how Miles is "supposed" to feel, how strong he "should" be. He should sit up straight and hold himself tightly, using his core strength. Yet as healthy and strong as all those babies feel, I love the way Miles is soft and cuddly. His floppiness might be a pain when it comes to putting him in and out of his car seat or getting him dressed, but he feels so good that I just want to hug and squeeze him all the time. And I can feel him getting stronger when I hold him. I can actually feel the change happen, which is amazing. That's why the fact that he is finally hugging me is so sweet. He has to engage muscles in his back, neck, arms, core and even mind just to give me a hug. And he is doing it now, even unconsciously when he's sleeping. I melt. Every single time. I melt.

So although it would be great for Miles to be stronger and engage his muscles to move the way typical kids do, I am okay with him taking his time. Because I get to really experience and savor the little moments. And those little moments become huge, exciting moments that make my day. Every day.

Can't Tame The Chaos

I was talking to a mom of two yesterday (a 6 yr. old and a 3 yr. old) who told me that she spend the first two years of being a mom trying to incorporate her baby into her life or trying to figure out how her life fit with her baby. She said that after two years, she finally stopped trying so hard. She realized that her life would never be the way it used to be and that she had to give in to the chaos. Once she did that, it ceased being chaos and just became life. Well, I'm still in that place of trying to figure out how to fit my life with Miles or how to fit Miles into my life.
I go through periods of having it all worked out, I'm in the groove and I'm feeling good. Then I go through periods of total misalignment, where life seems to be spinning out of control. Right now, I think I'm in some kind of transition period. Kind of like the weather: one day I feel stormy and emotional, the next day powerful and jubilant. And that's all right by me. I'm just navigating through these waters, taking it one day at a time.

The last couple of weeks have been both exciting and exhausting. I spent one very busy week, feeling like my "old" self again, booking several jobs and running around from one to the other. I felt guilty at times because I wasn't there for Miles' therapy or his bath time. But I felt great about having work! I was rejuvenated, inspired, my spirits lifted because I was taking care of myself. Miles was fine, he was being looked after by both my husband and my mom. He didn't miss any therapy and they got to spend more quality time with him. It was a win win.....yet I still had to tell myself that it was okay. That I was a good mother, that I wasn't being selfish. I still felt guilty. Why do I torture myself? Om....balance.....

Well, today I didn't torture myself. Today I let myself unfold with my day. I wasn't sure how it was going to shape up, but it turned out to be a fantastic day. I had no energy and no desire to go outside and be a part of the world. I dragged myself to yoga kicking and screaming and left feeling calm and clear. I spend the rest of the day with great company, had a long lunch with friends and a great gathering with my mom's group after that. Miles played and laughed and I ran around behind him feeling pure joy and love in my heart. It was a good day indeed.
Tomorrow? I'm not sure how I'll feel tomorrow, but right now I'm in a good state of mind and I'd love to keep it that way. I think the key is to remember that I cannot tame the chaos. Life is in constant chaos and that's the beauty of it!


Miles pics:

Here is Miles and some friends on a commercial shoot. That's right, Miles is following his mama's footsteps and trying to earn his keep in showbiz! Or something like that...he got the job through a friend and we're not making him earn his keep, but he did make some money! Go Miles! He was an awesome actor that day and had so much fun playing and working at the same time.

Miles and his wonderful O.T., Lilly.

Happy boy! These days, Miles has been working hard and having fun in therapy.

Uh Digg-a

Ever since Miles got a cold in Panama back in early Januray, our house has been like a clinic! We keep on passing colds, sinus infections and stomach problems back and forth between the three of us. Even my mom, whose been staying with us for the last week, went down! Oh and every time Miles' cold/nasal infection/diarrhea gets better, he's hit with tooth pain! Yep, those little baby molars piercing his gums for days at a time, keeping him and us awake at 2 am. Last night, I had just fallen into slumber when little dude starts yelling and crying in pain. I waited about 20 minutes before going into his room, hoping that he might just get himself back to sleep. But he couldn't handle the pain and I couldn't handle the screaming. So I spent the next hour and a half, comforting him and trying to get him to stay asleep in his crib, not in my arms. In the end, I failed and had to call in reinforcement because I could barely stay awake.
But in that hour and a half, as I cursed the situation while trying to exude calmness to my delirious child, I smiled and recounted all the cool things he's been doing lately.

Cool thing #1: HUGS! - Miles gives hugs now. Real, arms-around-the-neck-squeezing hugs!
I had only received hugs like that from other people's kids and even then I melted. To have my own child hug me tightly around the neck is like heaven. The first time he did it, I almost cried!

Cool thing #2: "Uh-Digga-A"- Miles is making this hilarious new sound where he's exploring new consonants and different tongue positions. Great for his speech development and great for making us laugh. He's been crawling around the house going, "uh digg-a digg-a digg-a". It's comedy!

Cool thing #3: Straw Drinking! - Okay, another great thing for strengthening his mouth and tongue muscles, therefore helping with speech, is drinking from a straw. Every now and then I give him the straw sippy cup or just a straw to sip water with and he hasn't really known what to do with it until two days ago. We were at a restaurant and he didn't want anything, so I offered him some water in a regular glass with a straw and he sucked it right up. And wanted more! Woo-hoo!!! Now we can start working more with a straw and hopefully getting him away from the bottle finally!

Cool thing #4: Eye Exam Results- Miles went in for his first eye exam and passed with flying colors! The doctor said his vision is fine and she sees no problems with jittery eyes, crossed eyes, cataracts, or anything else. She said that unless something came up, she wouldn't need to see him again for another 3 years. Okay!

I know there were other things, but I can't remember anymore since it was past midnight and I've had 3 shots of espresso today and I'm a bit too jittery and scattered to think straight. Point is, that as terrible as the sleepless nights may be, they are worth getting those little hugs from my baby and hearing him find his voice and knowing that he's healthy and getting stronger every day. I'm exhausted and cranky at times, but so is anybody who's averaging 5 hours of sleep a night. At least I get some pretty amazing rewards out of it!!

A Little Help for Mom

I’m not Super Mom. I’m not Wonder Woman. I’m just me. A mom with a child who has special needs. He’s a perfectly normal child with an extra chromosome, thereby delaying most of his physical and emotional development. It doesn’t sound so hard on paper. But in reality, even when I think I’ve got it all under control, I realize there’s usually an internal struggle happening. If you see me and ask me how I’m doing, I’ll tell you I’m doing well, thank you. Because I am. I’m not on the verge of tears all the time anymore. I’m not completely and utterly devastated, depressed or angry anymore. I am all of those things and more on any given day and under any given situation. All those feelings and emotions are living within me constantly. I just don’t need to bring them up all the time. If I did, I would need to be institutionalized. Instead, I’ve learned how to cope with my circumstances. In fact, I more than cope, I do well. I feel happiness and love as well as sadness and anger. It’s all part of my life and I accept it all. Honestly, right now the hardest thing to deal with is my schedule!

Organizing my life so I can be there for Miles and his therapies and my career and being a wife and a friend and having time for myself, is difficult. And I realize that part of the reason it’s so hard for me to get organized, is because I want to do it all. My husband freelances, so he can help with Miles on his days off. My mom just moved to LA, 5 blocks away so she can help me. My in-laws and my brother also live in town. But no matter how much they want to help, they all have their own lives to deal with first. And nobody can be there for Miles the way I can. He’s my son. I know when he needs to eat and what he needs to eat and when he’s tired and when he’s just hungry or cranky. I want to be there during his therapy so I can see his progress and so I can help him at home. I am getting an education in OT and PT as much as he is. If I wasn’t present for his therapies then I wouldn’t know how to feed him properly or how to help him transition from sitting to standing and vice-versa. I wouldn’t know to help him crawl and reach for toys and use his core. I know how to help him because I am there to see his progress and be taught by his therapists.

I know I need to accept help more, but I am pretty attached to this little dude, even if I need time away from him. Like I said, I want to do it all. Maybe deep down inside, I do think I’m Wonder woman.

A typical day for Miles and I consists of 1-2 hours of therapy, at least 1 audition or a booking for me, preparing meals, cleaning up and dealing with house “chores”, answering emails and phone calls and some playtime with Miles (if he’s lucky). Once he’s asleep, I might read or watch TV for an hour, sometimes finish emails, but by 10pm I am seriously pooped and plop in bed ready to start all over again the next day. It’s exhausting, but in a way, I love it. I want to be able to put more time and energy into my acting career, I do miss it. But it’s hard for me to let go of my role as a mother and therapist long enough to have more time for myself. I’m working on it, I swear, but it’s a slow process.

I had my first “theatrical” audition (meaning non-commercial or voice over) in over a year this week. That same morning, Miles had therapy and was cranky, I thought he was sick. I had to wait for the handyman to come and give me a quote on a job and the plumber to come and fix the sink. I had to eat breakfast, take a shower, put on make-up, drop Miles off at daycare, make his lunch and snacks and look at my script all before 10am. It was hairy! I got to my audition on time and I was nervous and frazzled and unfocused, but I had fun. I had a lot of fun. And it’s not a matter of needing to book the job, but a matter of getting back into the game. I’ve been out of it for a while. But like I said, I am trying.

Today, Miles had his Speech evaluation from 9-11am in Hollywood, then I had to drop him off at daycare and rush to my voice over booking in Santa Monica at 12p. I barely had any breakfast and the voice over session ran long, so I didn't eat lunch until 2pm. And that’s another normal day. But as frazzled and unfocused as I may feel, I’m still smiling. I am trying to do it all and I do need help. But I had fun today.

I got to be there while Miles flirted with the Speech pathologist and I got to go to work and chit chat with friends while we waited to record. And I got to drive my car and sing along to the radio blasting while stuck in LA traffic. I got to sit here at a café for 45 minutes and write in my blog before picking up Miles in daycare. See, some days as frazzled as I may be, I can do it all. Some days, I can’t and that’s when I need to ask for help. And I will. I promise. I’m working on it!

On a quick note: Miles was approved for two hours of Speech Therapy a week!

So he will now have:

2 hours of Physical Therapy,

2 hours of Occupational Therapy,

2 hours of Speech Therapy and

1 hour of Infant Stimulation all in one week.

His schedule is booked up and coordinating playdates and doctor’s appointments and auditions and lunches is a challenge, but I’m ready to take it on…with my family’s help!