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!

Giving Thanks

I have much to be Thankful for and I am. Miles is my light and my joy and I thank my lucky stars that he came into my life. One year ago I was in such a different place. I was still quite depressed and in shock. I was trying to understand why this happened to me. Why did I have a baby with Down syndrome? I thought that if I could just figure out why this happened to me, that everything would be okay. I just needed an answer. Well, in the last year, I have discovered why this happened to me and there isn't just one reason. There are many reasons and the reasons will change throughout my life depending on where I am and what I'm going through.

I don't know why Miles was born with Down syndrome, but I suspect it has something to do with his own journey in life. He is in my life because there is much for me to discover throughout our journey together. A year ago the thought of the future with my baby with Down syndrome brought me tears, I am now excited for our life together and discovering all the wonderful things that connect us. Every single day I love him more and more. I can't believe how much my view of life has changed in such a short time.

I am also incredibly thankful for my loving, supportive, funny, helpful, and awesome husband. This journey would not be fun without him. He calms me down and lifts me up when I need it. Who knew when we met 12 years ago that we would end up married with a kid in California! I had no idea, I just kept hanging out with him because he made me laugh. And he still does!

And of course, the rest of my family and friends who are always there when I need them. I am thankful to all of them in my life!

Right now, I am especially thankful for having my mom, sister and niece in town! How fun for the cousins to be together and for all of us to bond. Good times.

Updates

So much has been going on in the last couple of weeks that I just haven't had the time to write. But I've wanted to!

We did our first Buddy Walk for the Down Syndrome Association of LA and our team, Team Smiles, came in second place for amount of monies raised! The overwhelming support from all of you, our friends and family, was just amazing. And our team grew from the original 3 to 18 people!! Thanks to those of you who made it out to walk with us!


I was so nervous about the Buddy Walk and how I would feel being surrounded by so many people with Down syndrome, but it turned out great! Instead of feeling sad or scared about Miles' future and our future together, I actually felt pretty serene. Seeing all those families with their kids with Down syndrome, some young and some old, was beautiful. Everyone there was loving and supporting and their enthusiasm for our kids was exciting. So although I had certain moments of feeling like I was in someone else's surreal life, I was mostly grounded and present in my own life. And that felt good.

There have been many "firsts" for Miles in the last few weeks. He went on his first pony ride, which both scared and excited him, he starting waving hello and giving high-fives! And as I said in a last post, he also started holding his own bottle and finger feeding. It's amazing how many new things are going on with him!

Our next big hurdles with Miles are walking and speaking. His OT and PT are really working on his balance, weight shifting and strength, getting him ready for walking. He shows signs of wanting to walk, he is pulling himself up on chairs, climbing over obstacles (like my legs!) and standing up in his crib. But he still hasn't developed the core strength and lower body strength needed to sustain himself upright for a while. He also doesn't have the weight shifting down, which is an integral part of walking. So we are practicing standing, crouching, kneeling and holding himself up. To do that we just have to entertain him with some kind of toy. As long as he is focused on something fun, he doesn't think about the fact that he's standing and he can hold it for over 5 minutes! It's pretty exciting to see.

Then there is speech. In a couple of months, Miles will be evaluated by a speech therapist and we'll have a better idea of where he's at and whether he will begin speech therapy now or later. I can see him trying to communicate with us and starting to get frustrated when we can't understand him. He babbles a good amount, though not as much as typical kids. It is the quality of his babbling that hasn't improved so much. Now that my 1 year old niece is in town I can hear the difference in the type of babbling. It's almost like she has a larger "vocabulary" of sounds than he does. That's not to say he doesn't have any new sounds, but you know, as with everything it's just a little slower. So I am looking forward to his speech evaluation and starting him on that track. I do think that once he can talk, he will not stop cause my Little Man seems to have much to say!

The Good and The Bad

I'm feeling excited yet nervous about the Down Syndrome Association of LA's Buddy Walk this weekend. I'm excited to go and represent my son and our family and connect with other families like ours. We have raised way more money that I ever expected, so much so that our team, Team Smiles, is ranked #2 at the moment! I'm happy about that, but I'm nervous because at the same time being a part of the Buddy Walk and being with so many other people with Down syndrome can be quite emotional for me. We didn't do the Budd Walk last year because we just didn't feel ready. Miles was only 2 months old and we were still emotional broken. So this will be our first time really immersing ourselves in this world and it's already bringing up quite a few emotions for me.

I also looked at photos and information for some of the other teams and they are very well prepared with team shirts and banners and such and we've done nothing. I planned on getting baseball caps with a Team Smiles logo, but when I looked into it, printing just 10 was too much money. And up until a couple of days ago, we only had about 6 team members anyway, so it seemed like we would be pretty small. I honestly though this would be such a small thing for us, that I didn't put much attention into it other than raising money. Which we did.

I hope it goes well and that our team members do show up and that we all have a nice time. I feel like I'll need the emotional support!

Beyond that, I am very happy to say that Miles has reached a big milestone: he's finger feeding!! After months of practicing, he can now grab the little cheerios with his pincers and put them in his mouth! This just started about a week ago and since I'm not used to it, nor was I prepared for it, I don't really know what else to give him so he can feed himself. I give him the cheerios and the goldfish things and scrambled eggs. But he still only has two teeth and doesn't chew particularly well, so I don't want to give him too many things that he could choke on. I have had to do the Heimlich on him twice and it was not fun!

Miles is also holding the bottle by himself and can drink most of it on his own. He still can't quite tilt his head back and hold his balance, but he tries! And he is also starting to stand up on his crib and be curious enough to try to pull himself up on the couch. So many little milestones are starting to emerge at the same time, but I have to remember that there might still be a long while before he can actually walk or fully feed himself.



And although Miles is doing incredibly well in those areas, he is nowhere near speaking yet. He vocalizes and makes lots of sounds, including "mama", but I don't think he grasps what mama is or that I am his mama. He seems to know his name about 50% of the time and with gestures, he seems to understand simple commands. But not with the words alone. It amazes me to no end when I see other kids his age understand what a "horn" or "bubbles" are and even say the words. How does that happen? How do their little brains connect that so fast?
Do other parents speak to their kids much more than we do? Am I just confusing Miles because I speak to him in Spanish and nobody else does? I mean, I know it will delay his speach more than it already is, but will it also delay his understanding of things?
No matter, I have to stick with it and believe that Miles will eventually catch up, just as he is doing right now with his fine and gross motor skills.

And on another note....I was feeling kind of down a couple of days ago and I went on a rant about people and how they make me feel when they are trying to be nice. I feel bad that I wrote that, but it's how I was feeling that day and have felt at times. I have lots of ups and downs even if generally I am very content. Deep down inside, the little things do affect me. And I suppose this is all just part of my therapy. Thanks for understanding.