Friday, May 14, 2010

Making Progress

Progress is a funny thing.  People ask me all the time how Nate is doing.  I'm not really sure how to answer that.  Well, he's 16 months, but looks and acts like an 8 month old.  How is that?  He's about the sweetest little guy around, but progress is slow, really slow.  Looking at the range of timelines for milestones does not help me anymore.  Nate is on the slower end of the range, so what used to give me comfort now causes concern.

I asked our Speech Therapist if there is any correlation between a slow learning curve now and ultimate function later in life.  She danced around for a minute, but then said that there are some who believe that a slower start means lower function.

Hmmm, what do I do with that?  Do I dig in and push, push, push?  Yes, I have to.

As a Personal Trainer, I am used to pushing people.  But, I've never had anyone come to me and say, "I'm going to live with you for the next 20 or so years and want you to do everything you can for me to be the best I can".  That is a lot of responsibility!

I'm not a runner, but I don't avoid it altogether.  I don't hate it, I just don't crave it like some I know.  I think it's ridiculous that Marathons have been introduced to the masses.  (Did you know the first Marathoner died at the end?)  I have seen way too many people burn out or have long term injuries from pushing their bodies to run marathons.  I'm more of a short distance girl.  5k, 10k, even a half marathon.  So, looking at this long term commitment to Nate's care feels really big!

Okay, so that's what I've been feeling lately.  Haven't wanted to write about it because I want to be past this place.  I adore and love Nate so deeply, but there is still a part of me that wishes I could blink and we'd be back to the day of his birth and I'd see a different, I beat myself up.  I've had to process this lately because I have been eating out of control and know without a doubt that when I eat like this it's because there is something I don't want to have to deal with...

So, now I'm writing.  And dealing...

And actually, we've had some really big progress over the last month.  When Nate turned 15 months and still wasn't sitting for longer than 10 minutes on his own, I shared my frustration with our PT.  She looked around our family room for ideas of how to help him sit and came up with this setup:

It's a balance disc behind a table the great people at Early Intervention made.  So, sitting on this unstable surface gave Nate a constant reminder to work to stay upright.  We put him on the front 1/3 of the disc so that if he started to lean back, the pressure of the air at the back would give him a nudge to sit back up.  The day after we came up with this setup, Nate sat for 1.5 HOURS STRAIGHT!!!

So, a couple of days later, we were able to take him outside and he sat the entire time while we planted our garden!

We used this approach for about 10 days and then took him off the disc.  Now he can sit and play for a really long time!!!  He even spins around on his tush to get different toys.

And as of yesterday, Nate is drinking from a straw!!!!  This is so exciting for us!  It literally just happened.  He sucked down an entire honey bear of apple juice with his tongue pulled in!!!  

I'm really hoping that he was just stuck in a place of slower development because he hadn't mastered his gross motor skill of sitting.  Maybe now he will flourish and just surprise us with all sorts of new tricks!

Here's a video of us playing last week - he was in such a great mood!



  1. You make me smile so much. I love you!

  2. Yay, Nate! Great job sitting! And great job, Danielle, for being diligent in helping to strengthen his core muscles with that disc. Sometimes it's all about finding the right tools and other times it's about giving him enough time to process and learn. So glad he's drinking for you, too. He's cute as ever!

  3. Danielle,

    I think Nate is doing terrific...really I do!
    I agree with Monica in that it is probably more of a feat in finding what works for Nate. It's not that he's not capable or is learning too slowly...I think it takes the right combination of tricks to get our kids to succeed. It's hard but you are doing an EXCELLENT job and I have no doubt that Nate is going to continue to thrive and meet these milestones.

    Keep up the great work!

  4. Love you guys playing Danielle! Such a cutie!!!! He and Sofia are so close in age!!! :)

  5. hey Danielle - even though we don't see each, like, at all! anymore - just wanted to let you know I think of you often and continue to pray for God's grace, peace and joy in your life. You are an amazing woman whom I admire much, and I love you dearly Just wanted you to be reminded... :)

  6. I am ticked at your SLP for telling you that! There is also a school of thought that believes early success for determining later function is hogwash. As a fellow therapist, I can tell you that, while she is an expert in her chosen field, she is not an expert in Down syndrome. She has to have a working knowledge of numerous diagnoses and disabilities, but she probably is not an expert in any one of them. Take her predictions with a grain of salt.
    Nate is doing great and he will get there! You are doing a great job in working with him and YOU are the expert in Nate. Sorry for my rant. I just can't stand therapists over-stepping their bounds in order to save face. Ugh. :)

  7. Astrid EstrellitaMay 15, 2010 at 5:38 AM

    Dearest Danielle. YOU ARE AMAZING !!!
    Thank you so much for sharing your thoughts and experiences. It brings tears to my eyes to read and see the pictures and the video. I know how hard all this must be - but YOU are doing a FANTASTIC JOB. And by being so honest you also remind us all of life............ and to be more grateful for what we have - and to also enjoy minutes of life.........and living..........
    It was so nice to see u last year. I´m still grateful for your caring and teaching me about "an american wedding" ;) hihihi And also the walk and talk in the morning.
    Keep your spirit up - blessings to all of you.
    Love from me to you

  8. Okay - he is cuter than ever!!! What a personality.

    I have never heard that the learning curve at the beginning has any correlation to functioning later in life. Brennan is 2 and at 9-12 months developmentally. But, he, like Nate IS making progress, IS learning. Yep, the curve is slower - but they are both making great progress. Try not to look too far into the future. None of us know what the future holds for ourselves or for any of our kids. I once read a saying "worrying is like rocking in a rocking passes the time, but it doesn't get you anywhere." I try to remind myself of that when the worries creep in.
    You're doing an amazing job as Nate's mom - I can see in that video how much he adores you. And the sitting up and drinking from the straw are HUGE!! He's doing great, Danielle - and so are you. xoxo

  9. wow that smile and energy is contagious!!!! my entire day just got better from watching your video...its a gift to all of us!