Sadie's new life goal

I don't know if I've written about it in the past, but I have a short list of life goals for Sadie.  Meaning, these are things I'd like her to achieve at some point in her life.  They are things I know will take years of working on and lots of practice.

One of them is potty training.  I truly believe that with the right communication skills, Sadie can be out of diapers...someday.  We are actually in the process of getting a shower seat/ toilet chair combo.  Once we receive this, I'm going to start toilet "timing" and just like she gets fed on a schedule, I am going to do my best to sit her on the toilet on a schedule.

Another life goal I have for Sadie is to be able to sit independently.  Sitting opens up a new world of possibilities.  And actually I'm hoping this can happen sooner rather than later.  If she can sit, she can take baths.  If she can sit, we can eliminate the car seat and she can use a 5-point harness seat belt (when she's big enough, of course...I know children now stay in car seats like until they're 8 or 9!).  If she can sit, she can sit on the toilet, which takes the previous goal to a whole new level, because then she can potty anywhere and not just at a facility (aka home & school) that has the right equipment to support her on the toilet.

I want Sadie to be able to do a standing transfer.  This means that she can lift herself from a seated position, with the help of another person, or a bar, to another seated position.  So, she'd be able to hold on to me and stand up from her wheelchair and move to sit on the toilet, or the car, or the couch.  Ultimately, I'd like her to be able to take a few steps, but I'd be happy with just a stand and pivot.  This goal keeps me from having to lift her when she weighs so much, and keeps us from having to get a lift in our home...which we might end up with anyway.

And I've just added a new goal.

Yesterday, Sadie had her swallow test.  If you remember, the last one she did didn't go so well.  They told me we shouldn't be feeding her and that she should be primarily tube fed, with maybe 5 bites per meal.  And I was so frustrated and angry, but just kept doing what we've been doing.  And Dr. Wendy told me we don't ever have to do another test again if we didn't want to.  Well, we had to do another test, because insurance told me they needed the test results to justify paying for the thickener.

I over-prepared.  I took the feeding therapist.  I scheduled the test as close as possible to when Sadie normally eats.  I've been feeding her in a similar chair at home that they do for the test.  And I didn't starve her, like they say I should.  And this time she didn't aspirate.  She drank nectar consistency, which is like one of those Naked Juice or Odwalla smoothies.  They not only recommended that we start doing more liquid, they told me to start giving her chunks of stuff to munch, like pieces of banana or avocado.  She is just getting so strong!

So, I've added a new life goal.  I want Sadie to drink from a straw.  I am realistic in that I don't think we'll ever get rid of the tube.  The tube is so convenient to give extra fluids and medicines!!  Sometimes I wish I had a tube...boy did I wish this when I was pregnant! Think of how much it would help with morning sickness and hydration!!  Anyway, I think she'll always have the tube, but if she can control her own drinking through a straw it would be a big step.  I don't know if she'll ever be able to hold a cup to her mouth, so using a straw keeps me (or someone else) from having to pour liquid into her mouth and risking a mess.

I truly think Sadie will be able to do these things.  And probably once we learn some more communication, I'll add a life goal that has to do with communication.  I really think Sadie has the potential to go far, and to live an enjoyable life, and to do great things.  She is an amazing person.

Do you have a special needs child?  What are your life goals for him/her?  Maybe you haven't thought about this before?  Maybe it's time to start... if you don't have something to always be working on, you don't go anywhere.