Good morning fellow families of perplexing yet adorable children who happen to have Cortical Visual Impairment among their list of diagnoses…
If you have been following this blog for any length of time (a super-sized cup of gratitude to you), you may have noticed that there hasn’t been much activity over here at CVI Momifesto over the past few months. You may know from the post Up and Moved, Part 1 of ? that this is largely due to the fact that moving is like throwing your life into a blender. This is also due to the fact that immediately after moving I started a new job and any remaining time left in the week has been spent filling out forms to secure medical and educational support for my complicated kid, and occasionally – if absent mindedly – patting her older sister on the head.
Sometimes, for fun, I do laundry.
Sometimes I think, “Oh! That would be a great blog post!”
Then I go home where we are still living out of boxes and think, “Oh! My house looks like a particularly tragic episode of Hoarders!”
And everything just sort of spirals downward from there.
From a vision standpoint, being surrounded by clutter I haven’t been able to sort through yet really drains and distracts me. I am a typically sighted person. My experiences in this move have heightened my awareness of CVI and the amount of energy it takes to process visual information. Bonus: the extra helping of guilt that I can’t get a handle all of the piles of stuff fast enough to create a more accessible living arrangement for Eliza.
We haven’t been able to find the services we need to make our lives work here so it’s ALL ELIZA ALL THE TIME! And, it’s a new home, new routines (or lack thereof), new school, new doctors, new transportation and so on.
This is not a kid who thrives on change. So, moving, introducing new – well – everything AND having her first (severe) exposure to poison ivy wasn’t the best way to introduce her to Smassachusetts. It was, as they say in the South, a hot mess. Heck, it wasn’t even a hot mess. It was a lukewarm, stale mess.
At a 3 1/2 hour IEP in December, one of the school staff commented that it was as though Eliza was “shell shocked” for the first month or so when she started school. The stricken look on my face made her scramble to come up with a new description, but I understood. I felt that way too. I feel that way most days even when we haven’t just moved.
Proud parenting moment though. Who among us doesn’t want to have their child described as “shell shocked?”! #Winningatthismomthing
(Random Mom side note: I have been informed by my teenager that no one uses hashtags anymore. My last desperate attempt to relate to you whippersnappers has failed. #cronelife )
Speaking of school – I’ve used the phrase Death by IEP to describe my feelings about the marathon meetings we have had with educators and administrators in – oh, how many is it now? – 5 states in 12 years? Argh. I do not recommend trying this at home by the way. Leave it to the professionals.
The phrase still applies.
IEPs. Boy, have we had ’em.
I had hoped that an appropriate school placement would be easier to find here. The school district we moved into had other plans. Oh, they could accommodate her alright. But, she couldn’t start school with everyone else. She sat at home with me for the first week of school, in the sad episode of Hoarders, clinging to me as though she was about to fall off a cliff. This meant I had to delay starting a new job. Bills? Who needs to pay bills?
And, the school administrator wasn’t sure about transportation but he would get back to me in a few weeks or so. Because who really needs specifics about when and where your non-verbal child is being driven in a vehicle with people you’ve never met?
And, in those weeks when he’s getting information, she’ll just get up and walk the 3.7 miles while I go to work. Right? Oh, the confidence we felt in this new situation.
And, we had a surprise visit to the emergency room on Halloween after the tubing in her g-button broke during a g-tube feeding at school. (On the plus side, I now know a lot more about what kind of nurse/student ratio our kids need AND I’ll share.)
FAPE: Free and Appropriate Public Education at it’s best. (If you thought you heard a soul shattering primal scream during the first weeks of September and again on Halloween, you did.)
And, there is so much more, but we have had hours of meetings, hired an advocate and are using the proper channels and so forth….
Let’s just say that this photo borrowed from the interwebs accurately mirrors my feelings about so many things regarding this move, but especially, our school experience thus far.
Photo: Steve Carell in the film, The 40 Year Old Virgin, screaming after his chest hair has been waxed. My apologies to Steve Carell and Kelly Clarkson
Never fear, gentle readers and fellow families, I am bent but not broken. I am overwhelmed but not smothered. I know that Eliza has untapped potential. I am determined to get her where she needs to be. I am determined to find the people who can teach us both how we fit in this world.
Some days I don’t feel as though I am up to the task. Especially when Eliza’s sleep patterns revert to what they were when she was a toddler who never slept. Never. Slept. When every muscle aches to the core and I can’t keep my eyes open but the laundry never takes a day off. When I want to write something but there are dozens of pages of applications to fill out. When I’ve spent the last 3 days sleeping on the floor outside her bedroom to curb her nighttime roaming. When all of this happens I have learned that it is okay to sit and feel what I am feeling without judgement.
Then, I take a nap in my car.
Also, I find that a little primal screaming and dark humor can help me find my way. Sorry, Kelly Clarkson.
I have faith that I will find a team of folks to help us. I have done it before. I also realize that it can take up to 2 years to find the right therapists, caregivers, doctors, and – yes – school placements. It is the perpetual jigsaw puzzle that is our life.
If you are the parent of a child with special needs, I’ll bet you can’t relate to this. AT ALL.