Friday, January 3, 2014

What I've learned

Written by Heidi:

What I've Learned:

As a parent to a child with a rare brain disorder I have learned a lot. Leaving aside all the medical information I've had to self teach I also feel like I have studied:

  • 101 Therapy: PT, OT, ST
  • Design A Safe Room, ( this class is a 2 part, Long Term and Immediate Walk Thru For Visiting)
  • Safety During Meals (including dinners out, it's not just forks and knives that are dangerous)
  • Rules of Engagement (as RES has limited vocal filters)
  • Dealing With The Know It All's (this can include friends, family members, doctors and those complete strangers that tend to pop up wherever)
  • SPD 7.0 (I've only gotten to 7.0 as Ethan is 7 and this is an ever changing issue, I'm sure I will have more courses on this one)
  • Balancing Act (you can't just be able to juggle 3 things...I thinks it's 5 for him, 3 for me and 10 for things ALL around)
  • Organization:  More then meets the eye! ( thought you were organized before...think again)
  • Designing an IEP: class includes designing for those that meet... oh wait...none of the check boxes...ok redesigning  IEP's,  
  • Siblings:  how to get an older sibling to be kind... ah yes they fight....All the time...I've failed this one...don't ask me how.
  • Holiday Decorating: hmmmm can that decorative pillow be a trip hazard...why yes it can!
  • Fashion Design Fun: including what to wear to match those helmets and compression suits.
  • Falling, How To Not Over React: The toddler Years: this course is developed over a period of time as 75-100 falls a day are the norm but lessen over the childhood years but never seem to go away...
  • Parent Body: this includes how to use your arms, elbows, hips, feet, legs, head and shoulders as an ever present bumper for those 75-100 trips and falls each day.
  • Knowing You Don't Know It All: how to deal with the unknown as no one can tell you what to expect ( our neurosurgeon on our first visit,  said what the hell is this)
  • And yes, I'm aware that most of these courses can be geared to raising an  average child. But those that are raising the Special children, trust me when I say life college becomes a bit different.

No comments:

Post a Comment