Welcome to my blog! The posts are listed by date, with the most recent on top. Enjoy.

Wednesday, December 28, 2011

Looking Back: 2011



Once a month we go to a "learning class" for children with Down syndrome at Club 21 in Pasadena.  I love going because it gives us an opportunity to be with other parents who are on the same boat as us.  It gives Miles a chance to play with other kids with Ds and we learn real useful ways of teaching our children now and in the future. We get notebooks with information, flashcards, sign language cards, we go through a power point presentation and sometimes even role play with each other.  There is so much information that it is incredibly overwhelming.  Each month as we're driving out to Pasadena at 8:30 in the morning I realize a whole month has passed and I've only practiced with Miles a handful of times.  Guilt sets in!  I'm a terrible parent, I didn't do my "homework", I didn't make him work hard, I slacked, what's the point of going to these meetings if I'm not teaching Miles at home, etc etc et.  I berate myself for a few minutes until I hear the facilitator's voice in my head telling me that "just showing up for the class is enough".  It is enough right?  I'm doing as much as I possibly can.  One day I'll have more time and I'll be able to help my son learn how to count or read or write...right?

It's hard and I'm not the only who feels that way.  Every single parent in that rooms feels like they could and should be doing more for their children.  We all feel like failures.  We all feel frustrated with the difficult task of teaching our kids how to match objects or count or just keep them from eating the damn flashcards!!  We are all overwhelmed by the amount of material being presented to us and we're not sure if we'll ever be the right teachers for our kids.  We talk about it, we cry and laugh and share both our struggles and our successes.  It's sad that we feel like we're not doing enough for our kids because I look around that room and I realize the facilitator is right, we are doing enough just by showing up.  We are absorbing information and we are sharing with each other and we are doing as much as we possibly can to make sure our children get the same opportunities as typical kids.  We are arming ourselves with tools that one day will come in handy. We just have to have more patience and celebrate the little milestones as well as the big one because it will take our kids much longer to learn, that's just the reality.

So as 2011 comes to a close, I am looking back at how far Miles has come in the last year and it's huge!  He reached two very big milestones this year:  walking and talking.  He crawled for 10 months before he finally got the desire and the strength to walk, but he did it!  And he can also crouch, pick up objects and stand back up.  Seems simple to us, but it was a difficult thing for him to master.  Miles is also  communicating with us through sign language and a few spoken words.  In the last couple of weeks he has really started using his signs to tell us when he wants or doesn't want something.  This evening before bedtime, we were sitting on the couch in his room reading books when he suddenly looked at me and made the sign for "cracker".  I said (in Spanish and signing back to him), "you want a cracker?  are you hungry".  He made the "cracker" sign again, then got off the couch and walked to the door that leads to the kitchen.  I followed him, got him his crackers and we walked back to his room.  He promptly climbed on the couch, ate his crackers while I resumed reading "Good Night Gorilla".  When he had enough, he made the sign for "milk", so I gave him the milk and said it was time to go to sleep.  I turned off the light, he leaned his head on my belly and went to sleep.  We communicated.  There was no fussing or fighting or crying or kicking or biting.  I would have never guessed he was hungry, but I didn't have to because he told me.  It was amazing!

And you know what else amazes me about our communication? That he understands me in Spanish as well!  I've had so many parents of adults with Ds tell me that I should stick to one language, that it's going to be too hard for him to understand, they've made me second guess myself and feel shitty, like I'm not doing the best thing for my kid.  But you know what?  He understands me!!!!!  He gets me and that's all that freaking counts!   When I tell him, "busca tus zapatos", he knows to go get his shoes.  When I say "vamos a lavarte las manos", he comes to the bathroom to wash his hands.  "When I tell him, "quieres un huevo?", he points to the pan and makes the sign for egg.  He might not speak Spanish now, maybe he'll never even speak it, but you know what?  He understands it and that's good enough for me!  He is bilingual in my book and he's defying what all those naysayers have told me!!

There are so many other smaller milestones he's reached like being able to use his pincer grasp (index and thumb) to grab small objects.  He has much better coordination when using a spoon or fork and can get the food into his mouth 4 out of 5 times.  He can point to his ears and his head.  He can throw a ball and is starting to kick it too!!  When we're dressing him, he knows to pull his arms through the sleeves and he helps us put on his shoes....when he's in the mood.  Yes, he has a strong will and he makes many other things very difficult, like changing his diaper or taking him out of the bath or feeding him dinner.   He knows how to turn on the TV and is constantly trying to get us to let him watch it.  He throws fits whenever he's frustrated and he still kicks or bites us when he's mad, but doesn't that come with the toddler territory?  We lose our patience and want more from him:  more communication, more understanding.  But what we need is more patience.  I could dwell on the difficulties of raising him, on how challenging his behavior is right now, but I do that all the time.  Instead, I'd like to celebrate his progress and look forward to another year of happiness and discovery!

My Little Buddha Zenned Out!
Miles is going to be a big brother in 2012 and I look forward to learning from him through this experience.  I'm sure he will continue to teach me about love, compassion and acceptance while he learns to navigate his way in this life.  So cheers to you my sweet little man!!  May we both have the strength and flexibility to move through the challenges of this coming year.

See you all in 2012!














Sunday, December 25, 2011

Merry Holidays!

I love Christmas.  I love the cool weather, the colorful lights, the smells of cinnamon, nutmeg and spice.  I love the family togetherness, lounging about eating food all day long.  I love getting special gifts for those special people in my life.  Christmas time makes me think about the year that's passed, the memories made, the challenges overcome and it gets me thinking about the year ahead.  I start tying up loose ends and setting my intentions, recharging my batteries, looking ahead to new beginnings.   This year has been special because Christmas fell right in the middle of Hanukkah, which we also celebrate since Zach is Jewish.  Back in our New York days we used to have an annual Chranukkah party complete with secret santas and potato latkes.  But wow! how things change once you have kids!  We've gone from all night ragers with rum punch and spiked eggnog to parties where the children seem to outnumber the adults.  But it's all good, it's Life.  It's where we are right now and I'm enjoying it in a different way.

This year Miles is old enough to actually partake in Christmas and Hanukkah.  So we have been lighting the Menorah and he's been able to open his own gifts.  He even helped Grandpa Mikey stuff the stockings this morning.  I didn't put up a real tree because Miles would destroy it, but we still had a beautiful tree and lights and decorations and food and joy and laughter and much merriment. It's been a beautiful week spent with family and friends and an emotional week as I see how much my little man has progressed.

I am literally 5 weeks away from my due date.  Soon enough there will be a new addition to our family and everything will change again.  I'm scared and excited, thrilled and filled with trepidation.  I've no idea what to expect, so I'm just going to hope for the best.  Life is about to take a new turn for us and we are going to welcome it with open arms!

Merry Holidays to all my dear family, friends and readers.  May this season fill you with peace, joy and lots of love.
Our Christmas Tree!
Miles helps Grandpa Mikey fill the stockings.


Zach, Miles and Loreni

Miles trying to get to his stocking.
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                                    Miles playing with his new basketball hoop.  A gift from uncle Nico.


Monday, December 12, 2011

He Started Preschool

Today was Miles' first day of preschool.  Pre-preschool to be exact since it's part of the Early Intervention program for kids with special needs.   I've been stressing about this day for the last month.  How is he going to do?  Will he cry?  Will he have fun?  Is he going to eat the food they serve during lunch?  Will he hit, scratch or bite any of the other kids?  (He's been known to do this at times, usually out of excitement but sometimes not).  Will the teachers like him and treat him well?  What am I going to do with just 3 hours free?  I'm used to having a whole day free when he's at daycare, can I get anything done?  How will this affect his other therapies?  Etc etc. etc.  A few weeks ago I got those hives and leg pain, the last few days I got chancre sores in my mouth (it's hot, I know) all from my stupid anxiety.  I know, that's how I am.  

Zach and I dropped him off on rainy LA this morning.  He was a little apprehensive at first, not sure where he was or what was going on.  He was probably picking up our own apprehension as we weren't sure which classroom he was in and where to enter, what to do.  But once we figure it out and walked into his new classroom, decorated with winter snowflakes hanging from the ceiling, kids and toys everywhere, he asked me to put him down and went straight to work...playing.  He picked stood at a table with 2 other kids and lots of blocks and pegs and started playing as Zach and I talked to the teacher.  He seemed at ease, happy, excited to explore and I felt at ease, happy and excited to leave him for the next three hours.  I got a yummy kiss and hug goodbye from Miles, Zach good a wave and a high five and as we started walking out he finally realized we were leaving!!  In an instant he began to cry, his sweet smile turned into a painful frown, quivering lip and I started tearing up myself!.  I blew him a kiss and told him we'd be back and that he'd have fun, but I couldn't stay and prolong the moment.  As Zach and I stepped outside the door, I saw one of the aides scoop him up in a big, nurturing hug and I felt okay knowing he'd be looked after with love.  But that didn't stop me from crying. 

We stood outside the classroom door, hugging and crying because our precious little man is entering a new phase, he's growing and we have to let him grow and trust that he will do well.  In fact, he will do great.  I know it.

When I returned three hours later to pick him up, he was enthralled with story time.  I called his name a few times but he didn't turn to look.  When he finally saw me, he stared at me like, "oh, you.  what do you want?"  I think he was kinda mad at me for leaving him there even though he had a good time.  According to the teacher he only cried a bit when we left, eventually tapering off and playing with all the kids.  She said he had moments of sadness throughout the day where his little lip would quiver and his eyes would tear, but he didn't cry again.  He's a strong boy!  He did fall asleep for 20 minutes during circle time and woke up just in time for lunch, which he ate well (except for the veggies!). 

Of course he would do well, he's Miles!  What was I so worried about?  The funny thing is that he's been in daycare since he was 6 months and that was definitely more nerve wracking than this.  I remember that first day I dropped him off with total strangers, him being so little and defenseless, I spent the day on edge, I couldn't wait to go pick him up.  And he was fine.  That time, he didn't even cry.  But he's a big boy now, this is school, this is real learning, this is part two of his therapy and the early intervention world.  This is stepping it up a notch.  He is older, he knows when we are there and when we're not.  He loves us and knows we take care of him and it scares him to see us go.  And though we can tell him, "Miles, we'll be back to pick you up in a few hours.  You get to play with the nice teachers and make some new friends", he doesn't understand what we're saying to him.  It does not compute yet.  So what made me sad today was thinking that he didn't know if we were coming back.  He was trying to believe, he wanted to trust that we would be back, but he was afraid that maybe we wouldn't be.  The thought of his fear made me sad.  All I want to do is nurture and protect him and though I know he knows that in his heart, he still gets scared.  My little sweetheart. 

Another challenge down.....many more to go!!

Miles with his backpack, ready for his first day of preschool





Friday, December 9, 2011

Thanks Mailyn....

Yesterday was Miles' last day of Infant Stimulation class and I was very sad to see his teacher go. Miles is starting at an Early Intervention pre-school on Monday so the regional center took away his Infant Stim teacher. In preschool, he will be basically doing a lot of the same things the teacher did with him, but three times a week for three hours a day.  It's a good thing for Miles, it means he's progressing well.  It was just sad for me because she's been with him and us since the beginning.  Mailyn was the first teacher/therapist to work with Miles.  He was just four months old when she started coming to see him.  Miles could barely hold his head up, he couldn't roll over, he wasn't making much sounds and I wondered what was this teacher going to do with him?  What could she possibly teach him or us at the time?  She actually taught us a lot.

On her first meeting with Miles, Mailyn showed us how he was tracking objects really well.  She showed us how he reacted to sounds and started introducing him to different textures.  At first, I wasn't sure how knowledgeable she was, she seemed a bit timid with Miles.  It turned out that she was new to this job and he was one of her first clients.  But within a couple of weeks, she had gained much confidence handling him and talking to us and I saw how his eyes lit up each time she'd come for a class.  She always brought different toys and stayed well on target for all his goals.  As the months passed, Miles began engaging more with her, actually playing, understanding what to do with certain toys and listening to Mailyn and her instructions.  She helped us with his physical and cognitive skills in so many ways.  We learned about child development and milestones and how to push Miles and introduce new objects, sounds, textures all from watching her play with him. 

Miles at 4 months
Of all of Miles' therapists, Mailyn has also been the one with least drama.  She was never late, she always called if there was a problem, she was courteous, sweet and very nurturing.  Miles got to really enjoy their classes together.  She would show up with two huge bags full of different toys and it was like Christmas to him.  He always sat attentively waiting to see what new toy would come out of the bag.  I'm so glad she got to see Miles crawl, stand and walk.  She got to hear his sound progression too.  He used to make no noises in the beginning, no cooing sounds, no baaaa sounds, nothing.  He never responded to his name or to any commands and now, he won't stop talking!  We might not understand what he's saying, but he's got such complex and varied sounds that he makes, he points, he inflects, he knows his name and her name, he helps her clean up after class....I could go on and on.  The point is, Mailyn was a huge part of Miles' early intervention.  She was a huge part of our first year, with all of our fears and anxieties about Miles' cognition and motor skills, what he would or wouldn't be able to do.  She saw us go through all that and helped to ease our fears.  And so I cried when we said goodbye.  We both cried.  She loves Miles very much and was also torn by having to leave him.  She told me he was her first student and couldn't believe how much he had accomplished in two years.  She is very proud of him.  As are we.  And thankful to have had her around.

So here's a big Thank You to Mailyn for being such a nurturing, knowledgeable, caring, warm, positive and wonderful teacher to Miles!  I feel very fortunate for Mailyn and other great therapists Miles has, who are not only helping him, but they are helping us navigate through this journey.


Below is a little video of Miles at around 5 1/2 months, discovering new sounds with his mouth and tongue and tripping out on his hand.  Pretty cool.....

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