I asked my son's eye doctor when my son would be able to tell us what his tunnel vision was. We know he has tunnel vision, when would he be able to tell us what he couldn't see around the edges? The doctor said something profound.
The doctor said that my son would never be able to tell us where his blind spots are. Because to him, they aren't blind spots. It's not like he sees black or sees through a tunnel. He just sees what he sees and doesn't see the rest. Like I don't think of what I'm not seeing behind me, he never thinks about what he's not seeing next to him or in front of him or where ever the spots without vision are. And most of the time his brain fills in the blanks for him based on what it remembers seeing moments before.
This has caused problems for my son when, for example, he is SURE that the foot rest on the rocker is up because he saw me reclining as he approached, so he puts his hand out confidently to climb on to my lap, only to discover with a horrible thud to the ground that, since leaving his field of vision, the foot rest had been pushed in and I'd sat up so I could pick him up.
His vision reminds me that sometimes as humans, we need to remember to turn our gaze away from the things we normally see and look for the things we don't see. Because if we don't turn our gaze elsewhere, those things, those places where we are misunderstanding, will never be understood. We all have tunnel vision. And we all can be tripped up by our misunderstandings.
Saturday, May 6, 2017
Here's what it's not. Justice is NOT that I, as an advocate for my son with special needs, can get him the services necessary to obtain equal access to educational material. Because I'm a squeaky wheel he has an FM system. Because we asked, he'll have braille. This is great for us, but were we not squeaky wheel parents asking for an interpreter, he'd never have gotten an FM system, his language wouldn't have advanced this much in a year.
So the analogous parent who doesn't have the resources to fight? The school will assume no FM system is necessary, saving a buck or two but ultimately decreasing that hard of hearing child's ability to process what's happening in the classroom.
But guess what COULD make injustice even worse. Loss of federal funding to schools through the new AHCA bill. See, there's this little line on my son's IEP form that says if he qualifies for medicaid, I allow the school to bill his medicaid account for health services received at school. Screenings, etc.
While my son doesn't qualify for medicaid, the school relies on that extra money. It allows their special education budget to expand to meet more of the needs of the students.
Notice, from my first long paragraph, not ALL the needs of students. Funds are still stretched thin.
Folks, TALK TO YOUR SENATORS. Let's not let the new AHCA bill pass.
And if they don't listen to stories about special needs kids, let's talk to their pocket book. WITH SERVICES early on, my child will live a self-determined independent life as a DeafBlind adult. [He has Usher Syndrome, a genetic condition unrelated to prematurity that will take his sight sometime in his second decade or beyond.] We expect him to have a job, live apart from us,etc.
WITHOUT SERVICES EARLY ON, we see a different story. He'll be very frustrated in school. He'll keep falling behind. And this is before his vision declines. He perhaps will hate writing and reading because they were never made clear to him, and literacy is key to his success moving forward. Without services, we can see a future where he'll be dependent on welfare.
Dramatic? Extreme? Perhaps. We hope not to find out. We do know one thing, though. Early interventions make a huge difference. We've seen this in our kid.
Our child will be fine. He lives in privileged. He has parents who will go to whatever extreme needed to get him services he needs. But there are other kids like him, kids on the margins. Changes to their lives early on, getting the services they need at school, will make a huge difference. School budgets are tight. This small change will have huge ramifications. Let's not fail them!
Wednesday, April 26, 2017
This blogger and storyteller will be performing at Listen to Your Mother! Come join me.
Here are the details:
Celebrating Mother’s Day and benefiting Safe Shelter for Domestic Violence, the live storytelling stage show that gave local motherhood a microphone, Listen to Your Mother: Southwest Michigan, returns to the St. Joseph High School stage for its Grand Finale on Sunday, May 7th at 4:00 PM. Early bird tickets ($15, general seating) on sale now at https://ltymswmi17.eventbrite.
com. Admission at the door $20. Brought to you by the dynamic production duo: Beth Haire-Lewis and Kim Jorgensen Gane.
Thursday, January 26, 2017
Since the last post Jonathan has continued to eat everything by mouth. He now can have PB&J sandwiches, crackers, cheese, mac & cheese, spaghetti, etc. He's graduated from feeding therapy, and while we're continuing to work with him daily to increase his ability to chew, he's doing great. He's even coming to us and REQUESTING food when he's hungry. Amazing.