A Poor Evaluation

Yesterday was a tough day for me. Miles had his end of the year Physical Therapy (PT) evaluation and he didn't do so well. He scored a "Poor", where before he was at least "Average". He is now 15 months old, but his Gross Motor skills are at a 9 month old level. I was so sad to get the results, I wanted to cry. But I didn't. I sat there listening to our PT talk about the things that Miles should be doing better and what we can do to help him get there.

So many thoughts crossed my mind as the therapist talked to us. Had I been deluding myself? I thought Miles was doing so well! He can pull himself up and he's starting to climb up on things. He can hold his own bottle and finger feed. He can...he can...he can...."oh no!", I thought. The therapist is right, Miles should be doing so much more! He should be crawling and taking steps, at least bearing weight on his feet! He should be able to catch a ball and roll it back. He should be able to understand at least a few sign language words. He should be a few months behind, but six! Six months behind his true age?

Of course, my next thought was that it was my fault. That I haven't been practicing enough with Miles. I've been too self-involved and preoccupied with my own things to give him the attention he needs. I'm a bad mom, I thought. And the thought after that was of one of utter frustration and and hopelessness. I thought, I can't do this, I'm too exhausted, it's so much work, why can't we just let him be, he'll catch up eventually. I went on to feel angry at all the people who have "perfect" babies yet still complain all the time. I felt angry at my situation and I felt sadness for Miles. By the time the PT left, I mustered a fake smile as I wished him a Happy New Year. Miles was asleep on my shoulder, my sweet little angel, snoring away, oblivious to my pain.

I spent the rest of the day oscillating between all my feelings: sadness, anger, frustration, guilt. Everywhere I went I saw "perfect" little kids doing all the things that Miles still cannot do: talking, walking, eating big chunks of food. It fueled my anger at others and at life. I felt rage inside and I let myself rage. I wanted to see how far I could take it. How long would my anger last? See, I was curious because lately I have been perfectly happy with my situation. I love Miles so much and I am learning daily about him, me, humanity. And I love this type of learning, it's powerful and exciting and makes life worth living. So I was curious to see how long I would wallow in my "K hole". As it turned out, it didn't last more than a day.

I wanted to wallow in my hatred for a bit, but it was difficult. Miles made me laugh and he reminded me of all the things that he CAN do. Miles doesn't just pull himself up to stand, he pulls himself to stand so he can look through his trunk of toys or so we can help him climb on the couch with us. Miles can look at himself in the mirror and recognize himself and laugh hysterically for minutes on end! Miles can feed himself with his little fingers while leaning back on his high chair with one foot up in the air. (He's very flexible!). Everything that Miles does now, was once a challenge we didn't know if he would achieve. But he has achieved so much. And he will walk one day. And he will talk. And he will run and possibly play the guitar and he'll swim and maybe even ride a horse on his own. He can do it all, on his own time, just like any kid. But unlike most kids, "his own time" will take longer. And we'll always have to bear the endless questions from strangers or even friends who just don't know enough about D.S. We'll have to explain that because he has low muscle tone, it's going to take him longer, but he'll do it.

I went to sleep a bit unsettled, a little sad. But I wasn't angry anymore. And today I feel like the luckiest woman alive again. Lucky to have the life I have, to be on the path I'm on and not know where it's going to lead me!

Miles Gets His First Haircut

That's right, Mr. Miles got his first professional haircut about a week ago. He finally looks like a boy!! Well, I always thought he looked like a boy, but 1 out of 4 people thought he was a girl. Yes, his hair was long and he has such a cute little face that it's easy to confuse him for a girl. It was happening so much, that I actually put a little hair clip in his hair one time to see if he really looked like a girl...and he did. He looked like the cutest little girl ever.
But he's a boy and I was getting tired of the, "Oh, she's so cute! What's her name?"
"His name is Miles. Yeah, I know. His hair is long."

Still, that's not really why we got his hair cut. Miles got a professional haircut because two months ago, Zach and I cut his hair at home and we did a terrible job. It was been growing back so messy that he started looking like Nick Nolte from the back. Not a good look for a 1 year old.

We found a kid's hair salon in Santa Monica. I was not sure how this woman was going to get Miles to sit still long enough to cut his hair without cutting his face! But she did it, in under five minutes. It was impressive! She sat him in a booster chair and went to work. She first sprayed his locks with water and he hated it! He started crying, I think out of shock more than anything. But after a few seconds, with a little toy in hand, he calmed down and she started snipping! She cut and shaped his hair while he played with his toy, until the very end when her comb scraped his forehead a little bit and once more he cried for a few seconds.

Miles is such a good boy that even when he's hurt or scared, he doesn't cry too long. He gets over it quickly and moves on to the next moment. Talk about living in the present!


In the end, he got to ride in a cool little car and take home a balloon. Not so bad for his first pro haircut! And now, my little dude really looks like a dude.

Lullabies and Early Risers

Miles is an early riser. Usually by 5:30am, I can hear him yapping in his crib. Most of the time, I leave him in there to his "thoughts" for at least a half hour before getting myself up out of bed. I am not an early riser. Neither is my husband. I mean, I enjoy the occasional early wake-up to watch the sunrise and enjoy the stillness of morning before the rest of the neighborhood is up. But this has been the drill for the last 8 months or so. At first, Zach and I tried everything from putting Miles to bed real late, to making him skip naps, to feeding him a lot or nothing before bedtime. We found that nothing really worked. He likes to wake up between 5-6am. That's his thing and we've resigned to going to sleep very early if we want to have a full night's sleep. For me that means getting in bed around 9:30pm, because I don't function well unless I get at least 8 hours of sleep. If I have too many nights in a row where I go out or stay up late, I get cranky and start to break down! Sleep is so important to me!

Well, I didn't go to sleep early last night.....or the night before.....or the night before that. I also haven't had to get up with Miles each morning (thank God!), since my husband and I take turns. But I still wake up when I hear him at 5:30 and it takes me a while to get back to sleep. Anyway, Miles slept until 6:30 this morning! Every now and then he does that and it's like winning the lottery! So I got that extra hour of sleep that is so precious these days. I mean, the sun was already up when I got out of bed to change his diaper. Unbelievable!

But that wasn't the point of this blog entry. I'm just tripping because it's 7:30am and I'm being so productive. The whole point of this entry was to tell you two really cool things that Miles started doing recently and which made me smile this morning.

One of them is pulling himself up on his toy trunk to reach in and grab toys. The other is pulling the string on a wind-up doll to hear the little song it plays. Both of these are big cognitive and developmental skills!

See, the fact that he knows what that big trunk in my office is and that that's where we keep his toys, means his cognition and memory are developing well. And the fact that he can pull himself up, reach inside and take out a toy means he's getting stronger! His balance, his core strength, his endurance, they are all getting better! To see him standing, just over two feet tall, dressed in his tiny brown pajamas, looking like Yoda, well that just makes me smile!



Then about 3 days ago, I put him down in his crib to take a little nap. He wasn't asleep when I left the room, but usually he'll pass out within a few minutes if he's really tired. So I went outside to turn on the monitor while I did the dishes. I had the radio on and was listening to music when I heard a recognizable children's lullaby. I couldn't figure out where it was coming from, so I turned off the faucet and the radio and there it was, the lullaby blasting from the baby monitor. I couldn't believe it!

Miles has had this Yellow Lion doll since he was about a month old. It was a gift from my brother Ryan and his wife Una. When he was first born, he was often soothed by the little lullaby that comes from the doll when you pull the string. So I used to keep it near him and pull the string for Miles to hear the lullaby. I had forgotten how much Miles loved that song until a couple of days ago when he was crying and I played it for him again. This time, I showed him how to pull the string, but he didn't seem to get it. Well, I left the Lion doll tied to the side of his crib in case he wanted to try it out. And low and behold......he did!! He figure it out. I sat there listening to Miles pull the string over and over again every time the song ended, for about twenty minutes! I was so happy I wanted to cry!

Well, he was doing it again this morning. Just laying in his crib, legs up on the side, reaching up to pull the string and listen to his favorite Lion sing him a lullaby. It was so sweet. Oh, the little things....they really do make me happy.

My Little Old Man

The "Old Man Stare-Down"

I feel a very strong connection to Miles. Does every mother feel that? What if you have more than one child, do you feel that same level of connection with each of them? I don’t know, but the connection I feel to Miles is very cosmic. That is obvious to me since I happen to believe that we are all connected on the level of our souls. But although I am connected to everyone and everything in the Universe, I don’t feel connected with everyone.

He is my baby, he lived inside my body for 9 1/2 months, of course I feel him more than any other human being. Of course! But still, it’s amazing to me. It still catches me by surprise sometimes. Especially because when he was first born, I didn’t “recognize” him. I thought I knew him so well that when I would first lay eyes on him, I would say, “there you are” or “welcome back” or something like that. But when I first laid eyes on Miles, my reaction was, “wait what? I don’t know you”.

I wonder if my expectations where blinding me at the time. Or maybe it’s just that I know him now and when I look into his eyes, I see who he is. I couldn’t see him 15 months ago. Of course, his photographs show the same look. Same soul behind those eyes, a soul that I now feel I’ve known for ages. I don’t know….maybe it was my expectations, maybe it’s just my narrow mind which has now been opened a little bit more, maybe it’s just time. Whatever it is, I know those eyes now. I know his soul. And I love it!

Miles is like a little old man sometimes. Certain looks and actions remind me of a little old man in a tiny village in Tuscany, sitting outside his home all day, people watching. The way Miles leans back on his high chair with his foot dangling to the side, totally relaxed like he’s done this a million times. The way he can sometimes stare at me (or anyone) for minutes on end with a serious poker face, only to crack a smile with a twinkle in his eye, once you give in to his staring contest. The way he takes people in, cautiously, curiously and then makes his decisions about them! You can tell when he’s sized you up, just like a little old man people watching all day long in a Tuscan village. It's so endearing to me. Miles is also so gentle and empathetic, yet he can sometimes be rough and have a hard time containing himself when he's excited. And when he's mad, oh man, his look could kill!

His face can show like 20 expressions in a minute. Everything he is feeling and thinking shows in his face, except when he wants to hide it. Like when he's doing the staring contest. How does he do that? Do other kids have stare downs at such a young age?

I don't know, but I find it entertaining and endearing and totally awesome.

In the last week, Miles has been hanging out with his cousin Maya every day. They are so darn cute together. They have hugged and held hands and pet each other's heads. Unfortunately, Miles bit Maya's finger yesterday and made her cry! Since he's teething, he will bite anything that comes close to his mouth. And Maya's finger got way too close to his mouth. So down he chomped with his 4 tiny, jagged and very rough teeth. And he wouldn't let go! Poor Maya. I know her pain, he's bit me so hard I've almost cried too!

But we are thrilled that he's finally getting some more teeth. He's had the bottom two for months with no signs of other teeth, just tons and tons of slobber everywhere. Finally, I saw some white on the top row about a week ago, then another little line of white where another tooth was poking through. And we thought that was it. But during a little crying fit, when his mouth was wide open, I saw two more teeth up there! So he's got the top four teeth coming in for a total of six teeth. The better to chew with!

Miles also had his 15 month check-up this week and I'm happy to report that he is in the 80th percentile for height and weight in the Down syndrome growth charts! He is a very proportionate little dude. And his pediatrician said that his muscle tone is really good right now, which I already knew but is nice to hear from a professional. In a couple of months he gets his vision test, but we're not too worried. So far, it looks like his vision is great.

Seriously, I couldn't be luckier. There are so many health complications associated with Down syndrome, and Miles hasn't had any. None. Knock on wood. But seriously. Not even the ear infections that are so prevalent from colds and his small ear canals. He seems to have a cold every other month and yet no fevers, no ear infections, nothing.

I was thinking the other day how more and more I forget that Miles has Down syndrome. Ok, well, I don't forget completely, but I don't think about it all the time. In most ways, he seems just like any other little kid his age. So he can't walk and his features are tiny and he has therapy all the time....but these are all just parts of life now. If I stop and think about, if I'm around a bunch of other "typical" kids, the differences become more obvious. But why dwell on that? We are all different and wonderful and unique, right?

I am very happy and so grateful for my beautiful, funny and healthy child. So grateful!