Last week HuffPost Parents shared an amazing and powerful “care map” that special needs parent Cristen drew to illustrate all that goes into caring for her special needs child. It was incredible to look at and see all of the items written out, the items that for most parents are juggled around in their head day after day. I am a very visual person, and seeing it all written out was incredible to me. It also made me realize “yeah, that’s why I feel so discombobulated most days, that’s a LOT to stay on top of”.
HuffPost Parents asked other special needs parents to create and share care maps as well. I was game, mainly because I like to get things down on paper, somehow it seems easier to make sense of things that way. It is kind of crazy to see how many people, specialists and “stuff” that you deal with each day, above and beyond what one would consider all of the “normal” parenting tasks and responsibilities. My Care Map is up over on HuffPost Parents, but I thought I would share it here as well. This is what goes into caring for Grace’s issues related to apraxia and sensory processing disorder…
I tried to break it up by colors. Turquoise was all that goes into speech therapy. Red was all that goes into occupational therapy. Blue was all that goes into transitioning to preschool. Orange are doctors and medical tests. Green is early intervention and the department of disabilities. Purple is Grace. And pink, in lower case, are the things that run through my mind, while all of the other items are occurring.
In retrospect it needed more purple, more about who Grace is. A girl who loves to sing (well, hum – but it’s singing to us). She loves her stuffed Violet. She’s all about raspberries, blueberries and Cinnamon Toast Crunch. She loves Play-Doh and playing with her pop beads. She loves the intro to tv shows, especially Mickey Mouse Clubhouse. She loves shoes and is more than willing to try on as many as she can. She can now say orange and loves to identify anything that’s orange. She’s silly as can be, loves to snuggle (if only for a little while), doesn’t understand why my laptop isn’t a touch screen like the iPad and is incredibly strong willed. She likes to have every single light on (our utility company must love her). She’s both terrified and fascinated by vacuums. She likes to carry her Violet, a doll sweater and two foam shapes with us when she leaves the house. She adores her sister, but doesn’t always like to share toys with her. She loves routine and has a great memory for it. She is a master at using the iPad. She is sassy, she is silly, she is sweet. She has an incredible sense of humor that somehow comes through without a single word. She is SO much more than apraxia.
Earlier I created a hand written version which also included my other daughter, my work and helping care for my mother. That just became a big crazy mess (which is what it feels like most days). I found it a bit symbolic that nowhere on the sheet was there room for the things that need to be done around the house and home, recreational time, hobbies or outside interests for myself, or my husband. Hmm… Not good!
On one hand it overwhelms me to see it on paper but on the other hand, it helps. Those are a lot of balls to keep in the air, and maybe I should cut myself a little slack when I drop a few (or more than a few).
This was certainly an interesting exercise, and I think HuffPost Parents for reaching out to parents and asking them to take part. This care map is honestly something I think her providers should have in their files. Something the people sitting in her IEP meetings should see, along with a picture of her beautiful face. There is a lot going on, so much more than any one individual knows or sees in her. No two children, even with the same diagnoses are the same, and parents will move mountains to help them. I think I will slip a few copies into my files, and the next time I have to meet with a case manager or go through yet another evaluation, I will bring it along. Maybe it will show something that their forms and check boxes do not allow them to see.