As a parent, you need to take a break every so often. You cannot pour from an empty cup. That’s when you should start considering respite care for your autistic child. Trust me on this, you will be grateful.
What is respite care for autism
Have you ever heard of respite services? One of the ways that parents can find some relief, is through respite services.
Caregiver burn out is bound to happen to anyone.
But for parents of special needs kids, it may sneak up on you faster than you realize. That’s not to say that we’re ready to just give in and call it quits; but even we reach the end of our rope from time to time. The problem? We’re all too familiar with this scenario: you call your neighbor, your best friend, your family members… and in return, you get a slew of excuses or I wouldn’t know what to do.
And I get it.
Parenting an autistic child is no walk in the park and let’s face it, parenting is tough in general. I say this with all of the love in the world. I love my autistic daughter unconditionally and that will never change.
But I need a break every so often or I’m going to pull my hair out (starting with the gray ones, of course).
As parents and primary caregivers, we understand and know our kids best. So this may make us hesitant to contact even our closest friends or family members.
But that doesn’t mean that you can’t have someone else take the reins for a bit so you can regroup.
Whether it’s from dealing with a particularly difficult meltdown or if your child is being just a bit too much; you need a break.
And let’s face it here- when we’re stressed out like this, our kids probably don’t want to deal with us either.
What does respite care for an autistic child look like?
So what is respite? As it relates to parenting a special needs child or being a caregiver of an individual with special needs, respite is as follows:
Respite services provide temporary relief from the demands of care giving, which helps reduce overall family stress. This often enables families to better meet the needs of their loved one with a developmental disability. Respite can be provided in the home or out of the home, during the day, evenings or overnight.
Respite can also vary in time from part of a day to several weeks.
Different types of Respite Care
Here are just some of the types of respite care available, depending on your state:
In-Home Respite Care– a certified respite care worker from a local agency, will come into your home when needed to give you a break or to focus on other tasks.
Community Respite Care – a certified respite care worker from a local agency, will take your child out into the community for a set period of time. This could be for life skills (grocery shopping, safety awareness) or for recreation (swimming, bowling, etc.)
Overnight Respite Care – your child will spend the night or weekend, depending on the facility, at a location that is staffed by certified and experienced workers.
Another place to look for respite care is to ask if your in-class aide might be looking for extra money.
I feel that one-on-one aides are severely underpaid for their work so they may need to supplement their income. One way they can do this, if they’re agreeable to it, is by coming into your home.
Is respite care right for your family?
At first, you may wonder if you can really do this. And I want to assure you that yes, this is something that will be worth the effort.
It may take some persistence and you may run into a few issues with finding a respite provider in your area. Often, there are lengthy wait-lists while you are looking for services. This is to be expected. However, in the meantime, start thinking of different ways that you could use respite care.
If you are utilizing in-home respite care, what could you get done in those hours?
If you are utilizing community respite care, what skills could your child work on? What recreational activities do they like participating in?
If you are utilizing overnight respite care, take advantage of this time to really indulge in some self-care or a date night with your partner.
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How to Apply for Respite Care
Respite care is usually accessed through your medicaid service coordinator or through your local office for people with developmental disabilities. You can also ask your child’s social worker for help.
Questions to Ask
How often will respite services be available? Weekly, monthly? How many hours per week or month?
What types of services are we eligible for? Community, overnight, in-home?
Will I always have the same respite care worker?
How long has this respite care worker been employed?
What types of training do your respite care workers receive?
Do your respite care workers know how to deal with meltdowns in public?
Are your respite care workers experienced with working with individuals with autism?
Those are just a few questions that you may want to ask when you’re looking for a respite care worker. Of course, you’ll probably have others and as with all questions- write them down right away.
Other ways that you can take a break without respite:
- take a walk
- read a book
- join a support group
For me, it means going to church choir rehearsal one day a week for an hour or so.
By the time I leave, Sweet B has had dinner so Kyle doesn’t have to worry too much. She’s also being set up for community habilitation services and we’re on the waiting list for an in-home respite care worker.
Parenting an autistic child can be as rewarding as it is stressful.
It’s also about knowing your limits and knowing when you need a break. And hopefully, you can get that much needed break before you have an epic meltdown of your own.
Want more help and advice? Grab my free autism parenting toolkit!
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Our local agencies are no longer providing one on one respite, only group respite. Group is not always an option. I’m in desperate need of respite to cover while i work. Any other ideas, recommendations or suggestions?
That is very true as it does vary from state to state and sometimes county to county. NY is usually very good for this stuff but recent budget adjustments may affect that :/