we have no family nearby, barely any friends and basically nobody who can help us out on any semblance of a regular basis in terms of getting a break or having some time together. Both DH and I are starting to feel the strain of it all. We moved to our town 3 years ago when dd was a newborn and I've always stayed at home so I don't even have any mom friends or coworkers to turn to. It has always been an isolating lifestyle but it's even more so now dealing with pdd-nos and fertility issues (no one understands either!!). It makes me retract even further from the few people I DO know because I can't handle all those conversations where I end up feeling worse either because we DO talk about it or we DON'T (it gets ignored). Nobody can win with me right now
But my real point of this post was to see how any of you went about finding a babysitter for your little ones if you don't have family or friends who can or are willing to help out? It makes me so nervous to try to find a stranger somehow or use a service but I really can't see going on with no support/respite forever! Thanks!
Well I have in home respite for both of mine. I also get overnight respite, where they go to the providers home.
Tammy
In the sticky, to the newbies of our forum ( or something like that ) if you scroll down there is a respite locator that youy can search by your state. if you call your states health and human services division, they maybe able to not only find respite but also provide the funding.Sorry to sound so ignorant, but what exactly is respite care? How does that work with spectrum kids? My dd takes a long time to warm up to people (she only just very recently warmed up to her own grandmother), has fear of strangers, and strong dislike of people in her home??? I'll check out the newbie forum for more info too. Thanks!Hey sally Respite care is having a babysitter specifically for the disabled child so you can have help or a break in taking care of them. different states call it different things. What we did when we got respite was the case manager came to the home and filled out paperwork about my son. Questions about how much time is spent caring for them and what their limitations and needs are. With that they determined how many hours of respite we got per week. I had the option to have the agency the state hired to send someone to the home or they also had a list I could go through calling people myself talking to them and interviewing them myself and then decide who I wanted to hire as my independent provider (I find I interview I hire I fire) After I chose my son's provider I set up what hours would help me most for them to be here. In the beginning they just came over and helped out with him getting to know him and his routines and more importantly him becoming comfortable with them. After I was comfortable I began to leave for short periods of time and gradually increased it. My son thinks of his provider as his buddy or hang out friend. They come the same days and hours every week but I can change them as long as my provider agrees and we report it. Im sure different agencies work differently.
Now there is also respite providers through our county's MR DD school. Its used differently. The child has to first qualify with a disability therough the COEDI. (He had to show a delay in at least 3 of 5 areas I think it was) Then the school has a max amount of funds set aside for each person and you call the coordinator ask for respite They give you a list of people (many are special ed teachers or assistants some arent) you call you interview and you hire the person. The school gives you a form that agrees to pay whatever amount and you keep the sheet and have it filled out and signed and the school then pays the person but it needs to be pre approved because sometimes the funds are depleted and you have to wait for the next donation to come in..... This money can also be used to purchase trampolines, therapy balls, weighted blankets or vests, head phones and so forth.... Call your local MR DD school and ask if they have a family resources and ask about it. Its one of those things no one will tell you about.
Anyway........ thats how respite works for us anyways.............. I hope this helps some. If you have trouble finding the respite service locator link let us know we will get it and post it for you.
i wish my case manager would help me find respite. she's making me find my own, and it has to be somebody i already know - a friend or a family member.
That is generally the way it goes. I know I get in home respite thru St. David's. And sometimes I have to wait months before I get a new pca as they are called. I know when they are gone I generally catch up on my sleep. And of course no one wants to do something when they are gone. Only when they are home do they want to do anything. So I hear you on that one.
Tammy