Jeremy and I have come to learn that having a special needs child means having to ask for help. Help is hard to find. A teenager in the neighborhood is not equipped to watch him. Getting out just to run errands can be a challenge, let alone Jeremy and I go out on a date. It can be overwhelming and extremely frustrating (I have blogged about this is the past, Help Wanted).
Thankfully we have some help through a waiver available to special needs children in Virginia. First we had an attendant, now we have a nurse. Still that does not mean our life is not complicated and hectic. Brayden is being well taken care of but it only covers the basics for us like the ability to run errands, tending to Carter and Luke and their school activities.
Yesterday, Jeremy and I had the opportunity to meet with director of Jill's House. The facility is the first of its kind; a place for overnight respite care and therapy programs. The building is such a special place and made for the children to really enjoy. With outdoor themed wings, sensory rooms, music room, swimming pool and so much more. The facility is planned to open sometime in the fall. Check out their webpage, Jill's House and facebook (watch the videos, they are good).
Where do you find your help?
4 comments:
gosh, i was eligible for a nurse to come four hours a week through carers respite, a normal carer wasn't legally able to use the feeding machine or give meds. the nurses cost too much to employ any longer than 4 hours a week for 6 weeks. our local therapy centre had a respite house, but your child had to be 5 years old and over. palliative care and a group called northern childrens network worked together with a child care centre to fund a one on one trained carer for harvey so that he could begin to go to childcare one day a week. i was also eligible for a cleaner to come for an hour a week . i was on my own most of the time and had no family around. i felt very isolated and exhausted and had to learn alot of medical procedures and just cope with it. i wish i had the level of support available to me that you do, because it is definitely needed , im glad you are able to get overnight respite away from the home, xxx
I just looked at Jill's House and am so impressed! I love it, and I would love for someone to get this in Central Michigan!
Jill's House looks like a wonderful place!
We have struggled with respite care. We are entitled to a certain number of hours in a 6 month period because we are in a waiver program. We don't want to use it on a regular basis - just every once in a while to get a break. We are only allowed to use one company and we are only allowed to use nurses because of Emily's g-tube. That narrows the field considerably!
We are thankful that we finally found a nurse that we like, that Emily is comfortable with and that has hours available. We are trying to take full advantage before she takes on another job or something!
we have found help through a couple of outlets. approved nursing care at night through insurance. a volunteer respite program that matched us with a volunteer that comes once a week (usually just for an hour or two) nursing care at an amazing daycare called Child's Way (also through insurance) and finally, we found a "babysitter". a nursing student that was working on wyatt's floor during one of his hospitalizations. she came for the first time last week. it felt great to be able to leave the house, if only for 30 minutes, to grab some groceries. hopefully she'll get more comfortable and we can leave her for a bit longer...we are lucky to live in Pittsburgh with so many valuable resources.
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