research

I am researching scholarships, sending emails, asking around at all the business that know Jacob, to see what they can do to help with fundraising efforts. I am bound and determined to find some way to send Jacob back to school this fall... if I fail, I will know I did everything I could in the effort. We will see. Once again, any help or hints is greatly appreciated.

race to fall

As of Friday, I have good news and bad news regarding Jacob's schooling this fall. I was told not to write off his attendance completely for this fall, which would be preferred. Bad news is, he still owes 22 thousand from last year, and he'll be slammed with another 36 thousand this year. I am to pursue every avenue for fundraising that I can. So I am. Every idea I've had in the past year, I am going to do, whether it is received well or not. I plan to hold a car wash, sell candles, sell raffle tickets for a 50/50 raffle, do a "flamingo flock", start a fundraiser on Facebook, sell things on Ebay and at a garage sale, and even try to have a golf outing. Any other ideas are welcomed!!! Wish me luck!

blow for the day

Living in the special needs world can often feel like a roller coaster. Highs of successes, no matter how small, can be easily overshadowed by the lows of defeat. This time last summer, we were riding the highs of college acceptance, shopping for dorm room, figuring out scholarships, roommates, schedules, trying to navigate the world of the upcoming separation.

Last week, we got the packet of paperwork for admission this year, as a second year student at P.A.C.E. This is equivalent to a senior, with many privileges, and new responsibilities. Jacob is preparing to go to school and is anticipating all of these changes with delight and excitement.

This morning I got an email from the director stating that Jacob cannot return back to school until his tuition has been paid down. I have not received all the information, how much it has to be paid down, what the due date is, etc. My head is reeling. How do I raise money when I feel like I have already tapped family and friends dry. Haven't I asked enough? begged even? I am actively looking for any leads that can assist with fundraising.

I keep telling myself everything will be ok. But it feels so hopeless right this second. I'll do some research, find some answers, get some answers from P.A.C.E tomorrow, I hope.

In the meantime...what do I say to Jacob?

http://abcnews.go.com/Health/friendly-extreme-meet-kids-adults-williams-syndrome/story?id=13795416#.UA1eCUSegTl

A video and article about Williams Syndrome. Featured on ABCnews. It's so crazy to see other Williams kids, because they look so much alike. Its eerie!

I'm still trying to figure all this out!! I can get to my google profile easily enough, but finding my way to "new post" has been trial and error. I will eventually figure it out.

So for Jacob, he has been staying with family for most of summer break so far... my first break since summer '10. He was supposed to stay with family until mid Aug, but nothing is ever cut and dry. So he is on his way back home as soon as this weekend. He is currently hanging out with his twin!

When he comes home, we are going to have some significant trials getting him placed into a day program while we work. That's the main reason why he was with family for the summer, it was free care! Trial number one, is going to be cost. I don't know how anyone is expected to pay for day to day living expenses, AND the care of a loved one and not starve to death in the process.

Trial number two is going to be hours... so far the centers I have found have 6a-6p as the hours they are open. I work some CRAZY hours that are often unpredictable. My love works part time, and goes to school part time, leaving more flexibility technically, but in reality, Jacob is very difficult to study with. He's not exactly quiet, will interrupt to literally say "hi", and has no concept of time. While my love is fully prepared to deal with this in theory.. what happens when reality hits?

I used to work 12 hour night shifts, and switched jobs in Jan. This was supposed to help all the "care" issues. So far, it hasn't helped much, but my psyche isn't so strained, so it IS better in the long run.

Trial number three is going to be having Jacob feel like he is part of the group once we find a day program that will assist him to keep using his brain, will keep him safe, and is close. He has been in a college program during the school year, and the summer has been more of a trial than we anticipated. We want him to maintain his skills, yet not sit in a day program with a bunch of 70 year olds staring at the wall. But he cannot be at home alone anymore... he almost burned down the house last summer. More on that next time...

intro

I've been thinking about starting a blog about our journey for a long time now. So now, I'm doing it!! I'm hoping this will be a funny, poignant, truthful, helpful journey, about what its like in the special needs world...where others can read and learn something, even that somethings aren't as big a deal as they seem in the moment, or that patience can take you a long way, or sometimes, the only thing to do, is laugh!!

So, I intend to be honest, if you don't like what you read, I politely request that you leave.

My name is Deb, and I am "raising" my brother. His name is Jacob, he is 23, he has Williams Syndrome, and he is the joy and happiness of my life. We have been on this journey since Sept '08. In Sept '10, we were joined on this journey, by my girlfriend.

We have had many wonderful adventures together, and I will be sharing them with you here!. Have a great day!!