Ahhh, the dreaded 'F' word. Nothing brings anger or fear faster then that dreaded 'F' word.
Of course I am talking about FUNDING. Grrrrrrr.
Got a letter in the mail addressed to my six yr old son from a government office. Right away you know it will be bad news or something confusing. Luckily for us, it was just something confusing. Seems that they are changing the way AADL funding will be received. I *think* after reading it, calling the phone number and listening to the lengthy message (with two boys screeching in the background) that this is the exemption form because he is under 18 yrs of age. Either that or he is exempt because he makes less the $20 000 a year.
So, more forms to fill out with no change in funds. Rather silly but must be done. I mean the kid is on his third AFO since spring and they cost almost $2000 a pop. Hell, we have a closet full of them since he first started wearing them at 2 yrs old. So the forms are a necessary evil.
Speaking of funding, I just found out that I could be getting more funding for respite. I could be getting funds for a sitter so that I could take Matthew to physio without taking Ryan. How frustrating! How am I supposed to know about all of the funding that is available to us out there?
And on that note, I just found out that if I had applied for extra funding shortly after Matthew's surgery, he would have gotten it immediately. Post-op kids get put at the top of the list for funding for physio. Because I didn't know and we didn't apply until he was 10 months post-op, he was put at the bottom of the list. So until we receive that funding, we exhaust my husbands work benefits, crossing fingers that it lasts as long as we need it to.
How do parents walk through this maze? Are they all wandering around blindfolded, smashing into walls like I feel most days? Is there some secret book out there that has not been passed to me? Or have I failed to learn the secret handshake?
One way or another, I need to figure this all out. I need to stop being the one wandering through this journey blindly hoping I find the right path. I need to lead.
tucked away on a mountain side
4 weeks ago