I’m glad you stopped by…
My name is Michelle Massie and I am the mother of Cole Massie; a young man of 13 who (much to my granola-mentality chagrin) loves guns, cops and martial arts.
He also uses a wheelchair, a walker and a service dog.
If you’re here, you probably have a similar story: 13 days in the NICU followed by missed milestones and finally: The Diagnosis Day.
For us, the dx was spastic diplegia-type cerebral palsy (meaning mostly affected from the waist down) followed by the waiting game of how many systems would actually be impacted by this brain injury.
Turns out there was plenty.
In addition to poor fine and gross motor control (scissor gait, can’t really hand write, no balance, etc.), Cole also has strabismus (exacerbated by two surgeries), severe learning disabilities (including dyslexia and dyscalculia), impaired executive function and a point-and-shoot gag reflex that strikes randomly.
He also tests as gifted for language reception and comprehension and has been a spokeskid for three major charities.
And then, there are therapies. Dozens and dozens; enough to send any self-respecting snake-oil salesman into a feeding frenzy. All of them left us with the distinct feeling that those we sought help from were in the same position we were: feeling our way down a dark hallway with more questions than answers.
Anyhoo, after seven years of battling with the monster that is L.A. Unified (who insisted that I wasn’t being “realistic” about my son’s disability because I felt he should be able to do basic math) I squawked “uncle” and withdrew him for homeschooling in February of 2009.
So this is our journey.
Why We’re Here
There are a lot of sites out there that lend support for therapies and emotional stress and the tough times we must endure as special needs parents.
But I wanted to have a place with a different perspective. It seems we’re often told to count blessings, view our children as gifts, take time for ourselves and turn to the spiritual. All of that is fine, of course, and necessary.
But there is much insanity, confusion and emotion wrapped up in the sort of parenting where you have to make decisions for your child that require you to become a neurologist, orthopeadic surgeon, opthalmic surgeon, physical therapist and psychic.
And when you get it wrong the stakes are so much higher.
So, sometimes you just need to stop floating through the clover fields of namaste and have a good kvetch.
And sometimes you really need to know there are others out there having those same forehead-slapping moments with rude strangers, meddling family members who don’t get it and dastardly school and state institutions bent on keeping your children as far away from the services they need as they can get away with.
And then you need to laugh. A lot.
Come on in, read some funny stories and if you like, let off some steam in the Beauty Parlor.
Because special needs parenting isn’t for sissies. But it is for those who have the biggest hearts.
Loads of love,