Christmas

It is Jacobs favorite holiday. He's been on 12 since Friday. We're going to my aunts this afternoon, and he called her this morning. He's already received several gifts, including a genuine headdress that he is understandably in love with. However, when my love tried to convince him to open presents today... He declined!!! Love this guy!

I want followers!!!

HELP!

Sidam touch

For those of you who are wondering, that's "Midas" spelled backward... You know, the Midas touch? Everything he touched turned to gold? Well jake breaks everything he touches. He's gone through at least three rocking chairs, he rocked his way through 4+ kitchen chairs (into splinters, I might add), has rocked himself through several spring mattresses, and now has broken my loves futon. I'm gonna get this kid a hammock and attach it to the stars... That way he can't pull it out of the ceiling, or walls, or posts, or anything else it might be attached to

30 day staffing

We are making a list of issues, concerns, and compliments for a big meeting tomorrow. After a missed call at 1:17am, and a slew of unanswered questions, I am nervous and apprehensive. Is it already the end? Did I do the right thing? It's so hard to tell with Jacob. How can someone be so verbal, yet so uncommunicative,, or am I the one with the problem??

Delay

It's been a while... And it's been pretty busy. Jacob moved in on 11/12/12 and ha already changed rooms, changed roommates, and changed jobs. He's come home every weekend whether he's wanted to or not. We've decided to have him come home every weekend as part of his routine. Thanksgiving, he wanted to go bak a day early, because he was pouting, and we let him. Last weekend, he came home late, and harassed us to no end about when he'd go back. We are still trying to determine if this is a "need for routine and plans" or something else. This weekend, he will be coming home early, and he won't go back until Sunday at dinner time. We will go to a work Christmas party Friday, breakfast with Santa at church on Saturday morning, a friends Christmas party Saturday evening, and church on Sunday. Keeping him busy and engaged while he's at home is a high priority of ours. He also has a new noise... Something I'm sure he's picked up from one of the other residents . Every time we go to visit, we are stampeded by several resident who crave attention. Yesterday for example, two residents were sitting on the bed with my love, I sat on the end table and Jacob in his rocking chair which I FINALLY got the cushion replaced for. His roommate wandered back and forth over the 8 feet between their beds. It was more than a little over stimulating. One resident sat sucking his fingers attempting to touch everything, and drawing hearts in the air in my loves' general direction. He is Jacob's former roommate. Another resident repeatedly kissed her wherever his lips would land. His current roommate was showing pictures of his family, and singing his favorite Madonna songs. During today's visit, I was only greeted by one visitor, Jake's roommate, and the staff. I had a good conversation about Jacob's progress with our favorite shift leader. Hopefully things will continue to move in a positive direction, and we will receive news about a new job opportunity for Jacob in the near future. Keep us in your thoughts!!!

Jacob Jacob Jacob

Jacobs behavior has been a little strange. Weds he went to an event at the library on native Americans with a friend. Thurs he went to a dance with the group. Friday he claims he didn't go to work, he watched a movie, he called after he had his blood drawn, which he HATES, and he called again around 930. The calls were freaking me out, like there was something odd going on. Saturday we picked him up, took him with us to visit a friend, had a nice steak dinner, picked up another friend, went to target, all the while offering to go to a bonfire and then spend the night with us. He repeatedly refused. When we got back to the home, he immediately reported that he had missed dinner, and wanted to know if they had saved his. Upon learning they had not, incredulous, he asked for a snack. He ate a ton of food for dinner, and had a snack that he got at target... Piggy Boy!!! He called later on to see if I would bring him his leftover steak. I inquired whether he was allowed to have leftovers or food brought from home, and he insisted it was ok. Today, I went to visit and take him a few things to personalize his room, he was sound asleep. I was told he had been asleep for about 1.5 hours, and he continued to sleep through my rummagings for another half hour. Upon awakening, he said hi, and immediately left the room. I dragged him back and had him give me input on where he wanted his stuff hung (stuff that he had repeatedly asked for in the previous week) and I had to keep going to get him to hang out with me. Soon, it was time for dinner, and he ditched me completely. I told him I was just going to leave, and I told the house staff I'd probably be back. But I'm debating NOT going back. I have no idea what to make of all of this. I have no idea whether to take any of it as good, or bad. I have no realm of comprehension why he acts like he doesn't want anything to do with us, and doesn't hang out when people are, or at least I am, there. I know he is very routine oriented, and that's probably all this is, in which case I need to learn to not take things personally. Argh!

Ok so far

Via phone call this evening, he seemed to be doing well. My love and a friend visited shortly after that, he appeared well, had taken over the tv in the living room with one of his movies... THAT'S my boy!!!!

It happened very quickly!!!

Jacob moved today!! Saturday we were informed that Jacob was all set to move in, and how about Monday?? Well, I got the day off, and he's IN!!! I'm a little apprehensive as I usually get to know people a little better before I just hand off Jacob to their care, but be assured, we will be there often... And the first sign of trouble, we're pulling him out. Tomorrow, he goes to work, and he's very excited and proud about this. He's going to work "like YOU, Deborah!!" More power to him!! Xoxo

It's happening, slowly

Jacob may be moving into a group home. It is the only "service" the state of Illinois can provide at this time. It is very close to us, we can visit, or he can leave at any time. He will be working every day Monday-Friday, unless there is a holiday. This is a huge leap in comparison to what he is doing now..... NOTHING. He is excited. We were under the impression that he would eventually be happiest in a group home. We just didn't think it would be so soon. He had dinner there last Monday to meet everyone. All his paperwork is in. He is going tomorrow for an overnight stay(24hours), and will go to work on Thursday. As long as that goes well, and I can't imagine it won't, all we have to do is wait on the state to process the paperwork. Unfortunately, the current time frame is "by Christmas" but I am trying to get a more narrowed down answer.

The home is the only one owned by this particular company, many other companies in IL have multiple homes. We like that this is the "one and only". The director has web there for 15 years, and 3 of the residents have been living there since it opened in 1992. These appear to be good signs. He will have a "goal program" similar to IEPs in high school. This will prevent Jacob from manipulating his new surroundings into letting him be lazy and therefore lose skills. We will see how this goes!!! Fingers crossed!!!

Changes?

There might be some changes coming up for us. but I don't want to jinx it, so that's all I'll say for now! We could use some prayers!

Fundraising efforts

Today and tomorrow garage sale items that were donated for LAST years garage sale will be sold, once again, to benefit Jacob's college tuition. Last year, I dreamed up the idea to have a garage sale to bring in money or his school. People were VERY generous with the items they donated. Today, I was able to sell some of the bigger ticket items that have been sitting in my garage for the past year, 2 bikes, and a beautiful curio cabinet. I still have MANY great items left to sell. Come by, and see what you can find. Jacob is also selling raffle tickets, and the winner will receive a $100 visa gift card. 7937 long avenue Burbank, il. The whole block is having garage sales as well, so come on over and see what there is! Tomorrow is Saturday, oct 13th. Hope to see you there!

New schedule, second week

Well Jacob is hard core acting out. He seems to think because he is not under my observation at all times, he can do as he pleases when I'm not around. He better watch it though, he's on a very thin thread. Next naughty- he'll be sat on, and this usually doesn't bode well for him.

On another note- the Jacobism for the week: Jake, my love, and her friend Dee were out for lunch Saturday. She tells my love that she is a nervous wreck over something. Jacob, listening
in, adds his own translation "I LOVE Shrek!! Dee and my love burst into gales of laughter... She coins the phrase "I'm a nervous Shrek!"

I love this boy.. Yes even when he's not on his best behavior. <3

New schedule

So I just finished my first week on the new schedule. It wasn't terrible. We will adjust. We had a meeting with suburban access, who hold the keys to services in Illinois. They updated Jacobs status as "emergency need" and then said they could offer another option that I don't have to wait on the state for. The option is residential, essentially group home placement. She said whenever there is an opening, we could visit and he could move in after the screening process for both ends is complete. She said i could speed up the process by expanding the "territory". He may get in quicker if i allow for further away, she suggested Kankakee, or Springfield. Really? Send him hours away to a new situation with a bunch of strangers? She said she knew of a male opening at a privately owned group home nearby. Since the residential services she was speaking of are not state funded, I assumed they are privately funded, so I asked her to clarify. She confirmed that indeed, I would be the one to pay for residential services. I asked her how much it costs. She nonchalantly responded $60,000-$80,000 a year.

Is she crazy? Does she have any idea what she's saying? Does she know the impact? Id like to think not!! Does she know that offer is not even remotely helpful? I'd like him to go to a group home when it's appropriate, but not like this! I'm not trying to get rid of him! I just need care for when we work. I could not believe how completely ignorant and unrelated her answers were to my problem. Ideas? Insights? Calming words, lol? Am I the one who's nuts?

Change

So we're pulling Jacob out of the adult day care. He doesn't hate it, but he's not his usual happy self either. I've rearranged my work schedule around my loves and now one of us will be with him, except for three days a week. A friend of ours has agreed to hang out w him on these days, allowing her to stay home more, and us to not go completely broke. In all likelihood, we will rarely see each other, but hopefully it is a temporary situation as we still hope to get services for Jake in the near future. Thank God for good friends and smaller bills. I'm anxious about my new schedule. I'm afraid for my health as I will be doing both days and nights. But a girls gotta do what a girls gotta do to support the family, right?

An idea...

I'm in Illinois where services for developmentally disabled adults are the WORST in the legal United States... thinking about finding a few other struggling sibs or moms or dads who work full time and swapping/grouping our "kids" into a kind of "care pool". Monday all 5 are at my house, tues they are at Sally's, Weds they are at Mark's, thurs they are at Jack's, and Friday they are at Mary's. This allows 5 families to keep their jobs, and have free or very limited cost care for their adult with DD. I'm thinking my job would be ok with me working 4 10 hour days, and I'm hoping other jobs will be flexible with their employees too.  I'd like to limit this to adults, since I drive by at least 20 preschools a day, where parents of young kids have their flexibility of choice, but I'm finding adult care very hard to find that is appropriate without boring Jake, or having him lost in "old people land".

Anyone have any input as to whether they think this would work?

Jacob's home!!

Sorry it's been a while.. Can u tell he's home from his summer jaunts? Been trying to find care for him so I can work. It's been depressingly hard or way expensive. We have currently settled on way expensive, because we have no other choice. I have a couple dozen calls out to many different locales: LARC, sertoma, suburban access, catholic charities, and etc. I finally got a call back today... From one. I hope this gets the ball rolling. They said they would process his updates (he's been in the system for over three years and we've received NOTHING by way of services) and we should hear back by next Friday... It's a glimmer of hope, but it will be a stretch and a half to pay his expenses for an additional week beyond what we had hoped for. Sigh. Nothing quite goes how you think it will, does it? Is anyone even read this anymore?

I wont give up on you

With the events of this summer, and having Jacob's future be in the hands of others for a few weeks while I waited for a decision, I have had "I won't give up" by Jason Mraz on my mind for Jacob lately. Today, I finally got the answer to the question whether Jacob will be able to attend school this fall. The answer is no. I have to pay off his tuition before he can go back. I asked how they expect me to do that, AND pay for his day to day care, and I received MORE non answers. I asked what other parents do... MORE nonanswers. I begged, nothing... Sigh. I applied for a student loan on Jake's behalf, a loan that was recommended by the person delivering the bad news today. We will see how that goes. I am moderately hopeful, without holding my breath. If that doesn't go through, I dont know what we'll do. But I won't give up.

work it

Planning for Jacob to not return to school this year. Since that is the worst case scenario, that is what we are preparing for. Visited a local adult day care today. It doesnt seem age appropriate at all, and its expensive... but less than the one we visited last week. Sigh, not sure how we're going to hack tuition that he still owes AND care now. I will still pursue fundraising efforts whenever possible. I also stopped by the building named the "Arc", but it was closed and looked vacant.... on it. Been researching Williams syndrome Foundation, and autism speaks for links to scholarships and grants. Any other leads are appreciated. We plan to have a car wash at church, a spaghetti dinner, and raffle tickets. A local business suggested a Bourbon Street fundraiser. I also plan to sell donated garage sale items from last summer on e-bay/craigslist/ facebook garage sales. A friend requested a t-shirt fundraiser, another friend emailed me about a flower fundraiser. Please let me know if you have any specific interest that i can capitalize on for a fundraiser. Thanks all =)

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!!