We Have Communication!

Miles talks to Ella

The other day Miles asked us for grapes.  He cupped his right hand and made little "clumps" of grapes up his left arm.  That's the sign for grapes.  And he did it so clearly.  Another time he tapped my hand to get my attention and then took his index finger and ran it down his neck.  He was telling me he was thirsty.  And I then I said, "do you want "leche" (while pumping my fist) or "agua" (while taking the sign for letter W up to my chin)? Ladies and gentlemen, we have communication via sign language!!  Miles is now at the point where he wants to communicate so badly that he tries everything, from yelling to pointing, to signing to using the few words he can vocalize (the newest one is "down).  When I say, "Miles lets go take a bath",  he makes the sign for bath and either heads toward the bathroom or protests because he's not done playing.  He signs "brushing teeth" and "cookie" and "elephant" and so many more.  He's also trying to make sounds, like a "quack" for ducks and "vroom" for cars.  His sounds don't really match the actual sounds of what he's trying to imitate, but he is trying and that's what counts here.

Communication is so important to us and we know it will be key for Miles' development and acceptance into the general population. Currently, speech is the area where Miles is most delayed and we are hoping to make as much progress as possible in the next 6 months before his early intervention therapies run out.  Once they do, we will continue to provide him with private speech therapy because we don't want him to fall further behind.  Kids his age are already taking notice of his lack of words.  He is the most social kid in any group, but already I've noticed some of his peers are starting to wonder why he doesn't speak.  And why he yells so much.  He yells because he's excited and he doesn't have the words to convey his excitement.  So he yells.  It definitely puts some children off....as well as some adults.  But it's the reality.  And as he gets older, the differences between Miles and kids his age will become more and more obvious.

I remember reading in a book about children with Down syndrome that the developmental differences between typical children and children with Ds are not that different the first two years.  But that those differences become more pronounced once the kids turn two.  Yikes!  If that's true, I'm a little scared because the first two years seemed like they were chock full of differences.  But I guess what I'm starting to see is more differences in the way people or other kids treat or see Miles and that's what scares me most.  I've gotta brace myself though and remember that I do have friends that will help me through it, because I'm gonna have to be strong to help Miles through those difficult times.  Oh, the future!

But I've gotta enjoy the present and right now what's going on is tons of receptive and expressive communication with Miles.....and Ella!  That's right, Miss Ella and I had a 20 minute conversation the other night.  She was "cooing" and "ahh-ing", making the cutest sounds ever and I cooed and ahh-ed right back at her!  She would smile and even tried laughing a little bit, it was the sweetest thing ever and such a different experience than with Miles.  He never quite made those sounds, instead started months later with some babbling, using consonants like ma and ba.  There is something intense and beautiful about experiencing both.  There really is.

Miles, Ella & Daddy!

Adapt and Deal

A good day

 Sick children.  Sleepless nights.  Crying.  Food on the floor.  Tantrums.  More crying.  Poop everywhere.  Whining.  More crying.  And did I mention very little sleep?  It's enough to drive me mad.  And it has!!  I try so hard to keep it together but sometimes I just lose my cool.  This morning was one of those times.


Ella was up at midnight, 2:30am and 6am.  Miles was up at midnight crying....never a good sign.  He woke up this morning a boogery mess.  That means no daycare today.  There goes my "day off".  I really needed a day off.  So my conversation with Zach this morning went something like this:

Zach:  "I'm sorry, I know you're really tired."
Me:  "It's not the tired thing that has me in a bad mood, it's the kid thing.  I'm done with these kids!!"
Zach:  "O-kay..."

Of course I'm not done done with my kids....but I am a little done.  Isn't everybody with kids a little done sometimes?  They are the cutest, most loveable people in our lives, but they are also a the hardest to deal with.   I keep hoping that once we can communicate with Miles things will get easier.  Or that once Ella is a bit bigger, sleeping through the night and interacting with Miles, things will get easier.   But I'm slowly realizing that we are already communicating quite a bit with Miles....he's just choosing not to pay attention to us.  Apparently he's "the best kid" at his daycare and "always pays attention" at preschool, but not so at home!  Yep, it drives me crazy.  And once Ella is crawling around I'll have to run after both kids, not just one!  So maybe it doesn't really get any easier, it just changes and you either adapt and deal or you don't.  I'm trying to adapt and deal, I swear I am. 

Some days are good

Guilt And Other Things

Miles & Ella "talking"

It’s been two months since Ella was born and I’m finally starting to feel like the fog is lifting.  Going from one to two kids is quite an adjustment for everyone in the family.  You have to make physical, mental and emotional space for this new little being.  There are days when that’s easy and days when it’s not.  So I’m trying to take it all one day at a time.

For Miles, not being the center of attention has been difficult. He likes babies and was interested in his sister from the beginning, giving her kisses, saying “hi” and wanting to hold her.  Then he realized she wasn’t leaving and that our attention was split between the two of them and that’s when started acting out with us. He got very needy, clingy and whiny.  He also noticed that we tend to Ella when she cries....so he started crying more. “Crocodile tears” as we say in Panama because it’s just for show.  But what an annoying show!  He’s been testing our patience, that’s for sure.  Then he caught a cold which turned into an ear infection, which turned into a second ear infection and then bronchitis.  Kid was sick for almost three weeks!  And the cold spread to all of us in the house, including Ella.  But now that we’re all feeling much better, I think that Miles is getting used to the idea of having Ella around. He still wants more attention all the time.  He whines and cries and throws little fits, but he is also starting to act like a big brother. When Ella is in her swing, he wants to swing her.  When she’s in our laps or on the floor, he gets down to her level and “talks” to her.  Every night before going to bed he gives her a kiss goodnight and he gets mad if we don’t do the ritual.

As for Ella, she is a sweet little thing who cries when she has a reason and takes the world in when she’s content.  She seems very comfortable around Miles, with all his yelling and carrying on and she doesn’t mind that he sometimes pats her a little too hard on the back.  It’s very sweet to see their relationship starting to form. 

For me, splitting my attention between my two kids, my house, my husband and myself has been the hardest thing.  I end up having so much guilt over everything!  I’m guilty if I spend too much time with Ella or too much time with Miles.  I feel guilty if I leave them with a babysitter so I can have some free time.  I feel guilty when I’m working and don’t want to come home to deal. It’s like I can’t win, no matter what I do I feel guilty.  Until today, that’s all going to change today. 

You see, I’m tired of feeling guilty and the last thing I want is to turn this into a horrible pattern that I teach to my children.  I want them to be self assured, open, curious, empathetic, free.  I don’t want them to be second guessing themselves and feeling a need to be perfect in all areas of their lives.  I want them to live, experience and learn!  So my first order of business is to stop judging myself. If I can give myself room to make mistakes, learn and grow then I will be a much better role model for my kids.  And a much happier person!

The second thing I’m doing is making my time with the kids count.  I know that the more sleep I get the better mother I am.  So there are days when I won’t be able to handle both kids with patience, but I won’t feel guilty about it and I will enjoy the days when my patience and joie de vivre are tantamount.

And the third thing I’m doing is setting aside quality time for myself and not feeling guilty about it!  I deserve a little break, I deserve to get my nails done or take a nap or go out with my husband or sit an watch TV for 3 hours and I shouldn’t feel bad about leaving the kids with someone else so I can have a little me time.  I am a good mother, but I will be a great mother if I can rest and remember why I love my life.

All of this is easier said than done, I know that.  I’ve been experiencing it and that’s why I am taking it one day at a time.  As with anything difficult in life, that’s the only way to get through it.