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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!

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