Sunday, December 1, 2019

I have no idea what I am doing: fostering independence

I really wish that parenthood came with an instruction manual.  Only modify that manual to be about special needs parenting and have it contain the knowledge and wisdom of a parents, teachers, psychiatrists, occupational therapists, speech therapists, patient advocates, and well, everyone!

All children are unique individuals with their own strengths and struggles so really you cannot lump them all into one group, but I do wish that I had some guidance.  I honestly have no idea what I am doing here when it comes to teaching Ellie life skills.  Am I doing too much for her and holding her back?  Or are my expectations too high?

My goal, like most parents, is to help my child to be come self sufficient.  She already is and will be capable of a great many things and while I am not under the delusion that Ellie will grow up, move across the country and live 100% independently without any supervision, I do want to foster her independence as much as possible.  What that will look like in the future -whether she lives in a nearby apartment nearby with someone checking in on her vs. a group home vs. living with us, I do not know. The thing is, I have absolutely not idea how to identify and teach her the necessary life skills to set her up for success.

Right now, I have the following short-term goals in mind:

A. Be able to make her own "meals" (a Nutella sandwich is a meal - don't judge!)

  1. Able to remove bread from package
  2. Open/close the Nutella jar (she's getting there!)
  3. Properly hold knife to remove Nutella from jar and spread onto bread
  4. Be able to open a package of food (i.e. remove the wrapper from a nutrition bar)
  5. Be able to unscrew the top to her supplemental nutritional shake

B.  Get this kiddo poop trained!

  • First and foremost,  this is out of my control and Ellie's control given her complex GI history and colon situation, but it is a goal nonetheless.

C. Able to change her bedding and put her clean laundry in the correct drawers

  • Bonus points for folding.

D. Drink from an open cup with all of the contents ending up on the floor or herself.

E. Understand the concept of time.

  • Ellie can read both an analog and digital clock to the 1/2 hour mark, but she doesn't really under the concept of time.  For instance, if I were to say that Kyla comes at 4:00, she does not understand that.  If I say you've got 5 more minutes, she only seems to grasp it if I set a timer.

Sounds easy, right?  It isn't.  I have a 10 year-old daughter who thinks like a 4 year-old with the fine motor skills and receptive language understanding of a 3 year-old.  Are the goals that I have set for her appropriate for her developmental level?  Am I pushing her too much or not enough? I feel like a horrible parent when I think it would be so much easier and faster to just do it for her (obviously, I am trying to avoid the "just doing it for her").

Oh and by the way, do not google "how to use a knife" or you will get some weird and disturbing results.

This brings me to changing my mindset.  Rather than focusing and lamenting about what she can't do (yet), instead let's celebrate what she can do all while trying to figure out how to give her the tools the she needs to succeed. . . . once I figure out what those tools are, that is.

After all, she has already attained several life skills in the past few years and I know that she will continue to gain more!

What she has already accomplished:
  • Laundry -  This kiddo has been using the washing machine with minimal assistance for years now.  I need to work on the whole folding clothes and sorting thing.  Also, I need to keep reminding her that if she is going to wash a lovey, she should wash her other dirty clothes at the same time.  As in, do not do an entire wash cycle for 1 blankie!
  • Cleans house - dust, wipes counters, sweeps/mops floor
  • Orders food at a restaurant - this is where her speech device comes in handy
  • Swallow pills
  • Administer her inhaler with assistance
  • Makes her enema for her cecostomy tube
  • Differentiates between trash and recycling (can someone educate my husband that cardboard can be recycled and styrofoam cannot?)
  • Able to get dressed, including socks and shoes
  • Able to put on jacket and pull up zipper
  • Uses a key to unlock doors - while this is good, it also means she is now able to get into my office!
  • Packs her lunch - granted her idea of a lunch includes  an entire bag of grapes, a bag of baby carrots and an unwrapped zone bar, but at least she didn't forget the ice pack!

So. . . if anyone has that special needs parenting instruction manual please send it on over to me!

1 comment:

  1. From that list I think you are doing splendidly! We all continue to learn and we all have strengths and weaknesses, I for one would freak out if asked to get on a horse.

    (And a Nutella sandwich is DEFINITELY a meal!)


I love your comments and I read each and every single one of them.

I have no idea what I am doing: fostering independence

I really wish that parenthood came with an instruction manual.  Only modify that manual to be about special needs parenting and have it cont...