I apologize - I have been reading the boards, but am new to this. I am a mom to two great kids and a wife to a great hubby. Our 3 year old son is our wish kid. His genetics/mito/metabolic dr surprised us and referred us to this without us even realizing what was happening!
MAW volunteers have been wonderful and we have had the chance to take part in some activities already.
We are scheduled for our trip 10/14-10/20. I have so many questions and we are so excited, but I first just wanted to introduce myself!
to the DISboards!! And the wish trippers thread!
Feel free to pop right in and ask any questions you have!
There is also a FAQ section on the 2nd post of this thread. It is on the first page, but down past all of the pre-trip reports and trip reports.
And feel free to start a pre-trip report, if you would like!
!
Maroo, if you don't mind my asking, will Lauren be living at home while attending college? What does she want to major in?
I can relate to the constant side-by-side care for Lauren because even when Phoebe can do things by herself or for herself she hates to be left alone. Usually the only time I can leave her is if she has some fave toys and her Baby Einstein dvds are on. That's why I am so happy that summer vacation ended today! Wahoo!!!!
I don't mind you asking at all!
Lauren basically had three choices she was looking into...
1. Go to community college close to home and live at home.
2. Go to a state school that is about 2 hours from her house - but it is considered probably THE most accessible school in the state and has GREAT apartment style housing for disabled students.
3. Go to a private school that is about 30 min from her house (and only 15 from Jackson, where we all work).
So last Wednesday Lauren went with both of her parents and me for her first official college visit to the private school that is close by. It is Mississippi College, for anyone that is curious - MC for short. To be honest - checking out MC was really just a formality - because for YEARS Lauren has wanted to go to MS State. She has visited there multiple times and was planning to go to school there and live on campus. But there were a lot of unanswered questions about how she would really do this. The folks at MS State said students do it all the time (they hire help and some is provided).
But when we got to MC, you could just FEEL the difference between a large state school and a small private school. For one thing, BOTH of her parents went there, met there and fell in love there.
We had been concerned that it would not really be accessible, because it has old buildings and is very hilly - but we were quite impressed with the accessibility and even more impressed with what they were willing to do to make it even more accessible for her. They are willing to install automatic doors in the places she frequents most and have already installed some for some other students.
The rooms for disabled students are all on the first floor in the new dorm very close to an exit (so that campus security can go one place in the event of a fire and get those students out of the building quickly and safely). They have a roll in shower in each of them and are designed for either one student, two students or one student and their assistant. They were nice rooms and in a newer dorm.
They will also let Lauren pick a few classmates to be close to her and can hand pick a roommate, if Lauren wants a student roommate that can help her during the night instead of a PCA.
The disabilities coordinator was so sweet and said that she would like to really help Lauren by being an advocate with vocational rehab. Voc Rehab, here in MS, helps pay for tuition for disabled students AND provides up to 12 hours of PCA help per day. So the disability coordinator basically works with voc rehab to get the tuition and PCA hours worked out - but you need an advocate with voc rehab to get the most out of what they have to offer. Sometimes they won't really "offer" something that Lauren is actually eligible to receive. So, it helps to have lots of people "on your side" to help with the process. The thing that MOST impressed me, was that this sweet lady said that she wanted to help Lauren with this "no matter where you go to school!" She had me right there!! Man, to think that they would be so kind as to help her regardless of her school choice. They were just awesome, and really genuinely want to help her figure out the best school choice for her, even if it is NOT MC.
Lauren did really well on the ACT and will get a good chunk of scholarship money for that and she is eligible for $2000 more for her leadership activities through the school and community that she does. (I told her Mom that NOW is where she "cashes in" for taking Lauren to all of those meetings before school and extra stuff all year long - it isn't easy to do, but the fact she did it is really going to help them all now). Then voc rehab comes in and helps cover what the school isn't discounting for them through scholarships. We have not done this process yet - but it seems like it won't be too much trouble to do - just lots of paperwork.
As far as her PCA's while she is in school...it works like this:
Voc Rehab gives a max of 12 hours per day. We think Lauren will qualify for all 12.
The school gives a minimum of 4 hours a day of PCA help, but they are going to talk to someone high up (maybe the President??) and see if they can make an exception for Lauren and get some more hours covered for her.
Then the rest, from what we understand, comes from the student - either with family helping or volunteer help or through time where she doesn't need any specific assistance.
We think her schedule may be something like this:
- Paid PCA for the morning to get her ready and out the door for classes
- School sponsored PCA for lunch time and a restroom break before or after lunch
- Hopefully school friends or school sponsored PCA can help her with dinner and getting back to her room
- Then paid PCA comes back, does all of her night stuff and spends the night and helps her get ready for the next day (which will be all 12 hours, probably)
I am sure her Mom will help her during the week - it may be that a few of us (her Mom, me and some other female adults) will each have a night of the week where we bunk out in Lauren's room to help her and that would be "free" hours that would make up for some that Lauren would have had to pay for.
Anyway...that is probably more info that you wanted...but that is what we are thinking right now. I promise you that before we visited and made a bunch of phone calls that her Mom did NOT think this was going to work without breaking the bank - but it really looks a lot more "doable" now that we have a lot of the information.
Lauren IS going to MC, by the way. She made it official this weekend and is in the process of filling out the application.
Our church is a mulit-site church - which means we have a main campus, but we have smaller campuses around the metro area - and one of those campuses is where Lauren will be going to school. So we are hoping she will meet some people from that location and have folks that will possibly volunteer to help her with some tangible things while she is in school, too.
Of course, Lauren will have to hire all of these people to help her. It will no longer be an agency. Lauren plans to hire possibly 4 students to split the school hours (unless she just happens to find a student that really wants more hours) and she will hire at least 4 trained PCA's to help with the mornings and more medical stuff. So Lauren has a lot of work cut out for her to manage it all.
Maroo,
Glad to hear that Lauren is doing so well. Her family is very lucky to have you!!!
You are so sweet. I feel lucky to have them, really!
I can't wait to learn more about your family, I hope you do a PTR!!
