March 8, 2012

Building Skills for Life

Another photo of Bertrand holding his own bottle. It never gets old!
And, yes, he is man enough to borrow his sister's bedsheets when his are in the wash. ;)

This is an entry for our bloggy friend, Barbara's, blog carnival based on the American Occupational Therapy Association's (AOTA) 2012 theme, Building Skills for Life.

The first 3 years of Bertrand's life, we were so desperate to do everything and anything to help our son that we didn't take time to prioritize our activities with him. The birth of our daughter, Victoria, harkened a paradigm shift. We could no longer waste time doing therapy for therapy's sake. Therapy had to provide a measurable benefit for Bertrand.

We shifted our focus to building skills for life. We had to evaluate, cut back, and in very few cases add therapy. To everyone's astonishment, Bertrand is flourishing! It's obvious in hindsight, but we learned that doing a few things intensively and consistently yields better results than doing many things sporadically.

The October and December intensive therapy sessions at Now I Can, while valuable in and of themselves, forced us to consider what and how we provided for Bertrand at home. (He has me wrapped around his little finger, so Mrs-Tough-Mommy-Therapist, I am not.) We hired two WONDERFUL therapeutic aides for Bertrand--Miss A and Miss V--to implement the significant at-home exercise programs which was prescribed. Together we established a few goals.

Goal number one: sitting safely. Bertrand could sit upright when placed on the floor, but because of his movement disorder, he would fall over and hurt himself. Now, he keeps one arm down, braced on the floor, or reaches down to brace himself. He rarely falls! This was a continuation of his work with Now I Can.

Goal number two: self-feeding. Bertrand was still being fed soft foods and a baby bottle for most meals. So for every meal, even though it would be faster or easier to do it for him, we helped Bertrand hold his own bottle. And now? He can hold his own bottle for most of the meal!

In this same vein, he is made to hold his spoon to feed himself his applesauce snack in the afternoons and we've varied the textures in his dinner--expanding his palate. None of this goes smoothly. It is messy. At the start, he is unhappy, BUT he does it. And he is getting better! Every. Single. Day. You can see his growing pride and initiative reflected in his beautiful smiles!

Other broad, lofty goals include: mobility (walking, power wheelchair), potty training, and communication (speaking, reading). WHY NOT? Hopefully, we've got some time with him. Nothing ventured, nothing gained. Yes, these are skills for Bertrand's life, but they are also skills for our family life. The more interactive and happier Bertrand becomes, the happier we ALL are. :)


  1. Oh, what a beautiful post! It warms my heart to read about Bertrand's gains!

    I still struggle with some of this stuff with BOTH my kids. Jade is capable of getting her own snowsuit on, really, but it's hard for her and she complains and she dawdles, so often I find myself doing it for her, just so it gets done. I have to remind myself that it's IMPORTANT life skills I am forcing her to learn by just saying, "No, I know you can do it yourself, and you have to at least try."

  2. ok, this totally made me cry...I am so happy he is making great progress. I love it & I know how hard you work...I also know it gets good job to both of ya!

  3. Thank you, ladies! Your encouragement means a lot. :) We couldn't this without the support of our family and friends. We are very lucky to have you all in our lives as well as our beautiful, wonderful boy. :) XOXO

  4. I'm beginning to think I cannot help a family jumpstart to the building skills for life in the early phase after diagnosis - unless they are ready. Seems like some parents have live through the trial of "the more therapy the better" before they realize the potential to focus energy on what will mean the most to the family and their child.

    You can be sure your words will be reappearing in my blog carnival!

    Thank you so much, Cristina!

  5. So true, so true, so true. The Early Intevention model of therapy--one hour once a week--is so often ineffective. In the last year, little John has made more progress in a few weeks of intensive programs (feeding, OT, and now PT) than he made in the rest of the year combined. Why does the therapy community at large not move toward more intensive programs? We had to work with doctors in Austria for the right intensive feeding therapy (thankfully online), travel to Alabama for intensive OT, and travel to Detroit for intensive PT. All the while, we were living in major metropolitan areas (San Francisco, Chicago) that should have had the very best sevices in the world. The intensive approach should be more widespread! What can we do?

    Hooray for you all, and hooray for B!

  6. Ashley you are so on target with what needs to be done - a major shift in how therapy is dosed. I've been writing about that issue for the past 4 years. (Guess that says I've not been very effective. :( )

    But, with parents coming around to the idea, there is hope.

  7. Barbara, don't lose hope! You ARE making a difference. Slowly but surely, I think we all will. :) Blogging about the intensive model as much as possible is key. Just letting parents know that there IS another way will eventually make a difference--at least for Bertrand and little John, it already has! :)

    Ashley & I will keep testifying and spreading the intensive therapy gospel along with you. :)

  8. You have hit such a key concept--
    It's so easy to burn everyone out (from kids to families to therapists) trying to tackle every possible goal that "could" benefit our kids with multiple challenges. But identifying and focusing on the most pressing, most beneficial few makes therapy and follow-through so much more reasonable and goals attainable. Very wise!! It took us the birth of our second child to reach this point too. Funny how their arrival causes you to prioritize by necessity. :0)

    Congratulations to Bertrand and you both on his new accomplishments!

  9. Wonderful post and happy to come over from Barbara's blog carnival! The issues of Ei and amount of therapy are hotly debated in DS circles too and I'm all for studying what is the best for each individual family and child but it's a developmental journey for us parents too isn't it?

  10. Thanks, Rose-Marie and Starrlife! The journey is a constantly changing one. Therapy priorities shift by the week/month, so we're constantly re-evaluating based on his readiness. But our overarching priority, Bertrand's happiness & well-being, guides all of our decisions. :) It hasn't always been easy, but it's getting easier. It's funny how a 2nd child has made that possible! :) Best to you and your families!

  11. adored this post
    this makes so much sense "but we learned that doing a few things intensively and consistently yields better results than doing many things sporadically."