Some days all I want is a nap (after drinking my wine while wearing my tee!), is that really so much to ask?
But most days I live in reality and realize that nap is never coming so I try and focus my efforts on things that would really, truly make my life easier.
- A table and chairs with lamp light in doctors office waiting rooms. We arrive the requested 15 minutes early for our appointment, sign in, hand over our insurance card, drivers license and credit card (swoon a bit over the hit the credit card is about to take) and then we are gifted with a stack of at least 3 inches but never more than 5 inches thick of paperwork to fill out. Questionares, data collects, permission slips, HIPPA notifications and those bubble forms we thought we left in high school comprise this stack. Then we are handed a clipboard. A clipboard!!! We proceed to sit in the waiting room for at least another 30 minutes trying to scribble as fast as we can on a toppling stack of paper while trying to recall when our now 13 year old learned to sit unaided and answering rapid fire questions and scripts from our child (Mom, where is my DS? Mom, did you know that the rat didn't cause the bubonic plague? It was the flea! Mom, I need an outlet, I only have 68% charge! Mom, how long is this appointment? Boom Shaka-Laka! Brrrring the Sting! Creepers gonna creep!). Can I just get a chair and a horizontal surface to set down my 5" stack of forms, my binder tote, my already exhausted arms and my embarrassingly large insulated cup of coffee (or Diet Coke, whatever)?
- Free wifi in the same doctors offices and waiting rooms without having to call tech support for a temporary password. Bescause, honestly, if I have to go back up to that desk one more time to request such a thing then it's just not happening and meanwhile, I could have some of this information you've requested if I could just email The Hubs or do a quick google search for our last doctor who's number did not make it through the last synch on my phone. Speaking of which...
- Can I get a phone that does not require monthly updates which will invariably wipe out half my contacts and/or change the appearance of my calendar app? Don't change the calendar app ever!!! Just don't do it, do you hear me? It creates a vortex of chaos that just cannot be conveyed without many explicatives and generous hand gestures. And can you make that phone water and crash proof, please? Thankyouverymuch.
- Please reform the student loan program and don't forget about those of us who graduated a decade ago. I'm hearing some promising ideas coming out of Washington for student loan reform. (What?? I know!) Nothing I've heard will help those of us who have been diligently paying now for 15 years and still have so far to go... I fully intended on going back to work after kids, I was going to use both my degrees to make a difference, pay off those loans and start a 401(k) but life happened. The chances of me ever going back to work are very slim, I am prepared to take care of my boys every day for the rest of my life. I'm giving up my chance to work in hopes that the therapies and education they are receiving now will allow them to someday find a fulfilling job and to make their own contribution to society. But seriously, that extra $300 a month can be a killer when insurance fights back...
- Will someone please close the loophole that allows self insured companies to bypass state (and some federal) mandates for treatment of special needs children? Its such an asshole thing for big companies to do and it's really screwing with families who need those rehabilitative services.
- Governors and Congressmen need to understand that the Autism population is a LARGE one and it is getting larger. The numbers of Autistic adults who are homeless, in prison, on welfare and in state run facilities is staggering. The need for services is not when they are transitioning into adulthood at 21, the need for services is at time of diagnosis and during school. If you support them now through education and therapeutic services these kids will grow up and have jobs, open businesses and pay taxes. You already know the alternative, you are seeing it now in the prisons, the soup kitchens and hanging out at the library because its the only warm and safe place to go.
- Figure out a way to meet the needs of high functioning special needs children who cannot function in the current idea of a "typical" classroom. I think the reason inclusion isn't working for some high functioning kids is because the classes are too big and the teachers are too few. No one (I'm looking at the elected officials here) wants to put money into education and teachers are absolutely NOT paid what they are worth. If we wait around for those teachers who find a "calling to teach" then we will have fewer teachers every year. A"calling" doesn't pay the bills and I know there are excellent teachers out there who can't afford to be a teacher when another job will pay better even if it's not their "calling".
I tried to keep it light hearted. I love my "Autism Warrior" tee shirt and my insulated cups, I really do. I still love those articles that share with the world a glimpse into the isolation and struggle that Autism families face. The secrets they share are absolutely true and so are these. Even something as silly as a table to fill out paperwork can make a day easier and some days easier is the best we can hope for because you know a nap just isn't going to happen.