Tuesday, April 8, 2008

Caregivers: Got to get them into our lives

Caregivers. When our children are younger or first diagnosed with a disability that term may not resonate. But as our children get “asked to leave” child care centers or family child care homes, or we find that we can not leave them with the teenage gal down the street while we go to the dentist, then we take another look at the term. Eventually, we realize that finding people to take care of our children when we are not there can be a Herculean challenge.

For my mom friends and I, identifying, arranging and managing caregivers is a part-time job in itself. Although we may be able to use group child care options, more often than not our children need one-on-one care providers. Mothers who work need care, clearly, for when they are at work. But mothers who work from the home also need respite – to renew themselves, go to medical appointments, carve important “couple time” or spend time with their other children.

But, of course, we need more than warm bodies. We need to find persons who can not only keep our children safe but also, hopefully, engage them, encourage playful interaction and foster independent living skills. I have heard stories of mothers training caregivers for a few months, only for the care giver to move out of the country. I also know moms whose children have had the same caregiver for years, and wouldn't miss that caregiver's wedding for anything.

As our children get older, we see that we may need caregivers for a good while, perhaps into and through our child’s adulthood. Our children can not be left alone at a certain age, like “typical” children. This fact may be hard to swallow when our children are young and we are living day-to-day. However, it is important to realize that caregivers enrich all our lives. They can be an important part of your child’s Person-Centered-Planning team, or bring an important perspective to IEP meetings.

Our Caregiver Story

For our family, we have two steady caregivers for Sayer (three if you count our on-site fall back, brother Jacob) and each bring different gifts to our lives. We found both “B” and “M” through word of mouth recommendations from other families. “B” has worked with us for over two years. She is always up for taking Sayer on outings such as to the movies, the mall, miniature golf, or her friend's farm. Her whole family has embraced Sayer and he plays with her nephews, attends family birthday partie, and goes to “B”'s parent’s house on occasion for dinner. Since we have no extended family nearby, we really value these kinds of interactions. “B” also stays at our house for the week-end a few times a year, so Dan and I can get away. As the Master Card ad goes, “Cost of a week-end alone at the beach: Priceless.”

My friend “L” introduced us to “M” over a year ago. For the past year, “M” has met Sayer’s bus on Tuesdays and Thursdays and been his companion for two hours in the afternoon. Sayer and “M” go on scooter rides or walks,unless there is a torrential downpour or snow - and sometimes even then! “M” also helps Sayer do homework and straighten up his room. He is a true buddy for Sayer, and he understands how to manage Sayer’s behavior, since he works during the day at school with another child on the spectrum. He can draw a visual schedule on the fly – a very useful skill!

Sayer is always counting the days until “M” or “B” come – we hear “Two more nights and ‘M’comes” or “Five more nights and play golf with ‘B’ a lot. How lucky we are to have them both!

How do we find these important folks?

Often, we look to those who already interact with our children or others, such as special education instructional assistants or recreation aides/mentors. Or, we scour Craigslist for ads posted by caregivers; word on the street is that results are mixed with this tact.

A strategic, well-organized way to go about adding caregivers to your family’s life is to read A “Stranger Among Us: Hiring In-home Support for a Child with Autism Spectrum Disorders or Other Neurological Differences. In this book, author Lisa Ackerson Lieberman, a counselor and mother of a child on the autism spectrum, discusses in detail how to identify your family’s caregiving needs, recruit, evaluate and hire candidates, and effectively manage them once they are hired.

I highly recommend this book, although to confess, I have not used many of Lisa’s strategies to find a broader base of caregivers than those few we have. I know we could use more options; sometimes I have to miss meetings or other events if my three “go to"people are not available. But, to be honest, I’ve had a hard time mustering up the energy to do find potential care givers, explain Sayer’s idiosyncrasies and strategies to manage his behavior, and invite additional people to witness the goings on in our homes. I know it is a chicken or the egg issue. If we had more caregivers I’d be less prone to burn out. But I’m too burnt out to find other caregivers. Is this just me?

Share your caregiver stories

Let's share our caregiver success or horror stories, along with tips and suggestions for using caregivers through our children’s life span. If you send them to me in the comment section below, I will compile them and add to the blog – we can create our own caregiving support network.


Pam said...

Hello, our son is 20 now and I absolutely agree with need for caregivers. We have always wanted our son's sister to be just that, a sister, especially since she is 4 years younger. So we rarely use her except for occasional easy times such as an early morning grocery store run when Geoff is still asleep.

One option that worked really well for us was to have a male teenager the same age as Geoffrey come over once a week in the evening to get to know him. After they had had about six months of time together I could confidently leave them alone and they did great. Nick came over every Tuesday night for several years (he now lives away from town). I have also found it helpful to get help with our typical daughter, for example, hiring one of our adult young single women friends to take her to the mall. She has a better time with them anyways and this saves my energy for other things......

Since I do work part time out of our home, we have used caregivig agencies (13 years now). There are several in town that provide care to people with disabilites. We have an annual home inspection where they check us out (simple things such as smoke detectors in place) and they come up with a care plan. We have two caregivers from our agency now: a man who has been with us five years (he is a grandpa) and a female energetic college student who has been with us six months. There are substitutes in the agency who can cover in a pinch as well. I do have to say that there have been definite bad days (people with car trouble, out sick, etc.), but most of the time we can get by and keep everyone reasonabaly safe and happy.

As an aside, my husband and I work different shifts. He is a RN at night and I do consulting work by day. We have been doing this for nine years. The advantage for us is that there can be a parent available if needed 24/7.

Hang in there, everyone, Pam

Carol said...

Thanks for sharing your story, Pam. I hadn't thought about contacting an agency. That may be something to consider in the future.

Pam said...

Hi, Pam again. If you want to check into agencies, just look under "home health services" in yellow pages. Even if ad does not list disability care, most do include it.

We also have been helping several high school students over the years complete required volunteer hours and/or senior project. No matter what your field, being comfortable around someone with a disabilty is a huge plus. Geoffrey has enjoyed this; one student did taste tests on different koolaide flavors, another did art with him, and another visits his class in a mini skirt and push up bra (heard this from the teacher, who says the mostly male student whole class loves it). Take care, everyone. Pam

Cindy said...

Hi there Moms,

Ahhh, the eternal search for caregivers. Drives me bananas, and I've been at it for 15 years. However, I am a believer in possibilities and not one to make an ado about the effort needed to drive forth change. I can fling paint when my job is done.

I used to have a 'roster' of seven women, most of whom were students at varying stages of their post secondary education. Now I am down to two gals. I, too, have experienced the chicken and egg scenario...too burned out to train new ones. Advertising in the paper was a dead end as it brought in ALL kinds of unique people, none with the qualifications which were advertised. Other parents have been finding it increasingly hard to find caregivers too. So, at a community all-supports meeting the issue was addressed. Even the services and associations which were mandated to 'find' care workers, have not been successful. (Four-month waits just don't cut it for most families.)

We decided that finding a 'home' for a Community Caregiver Service (screening, training and matching) would support families who were looking after children, youth or their adult parents with caregiving. A one-stop shop idea formed. We envisioned something which would serve multiple caregiver needs, provide volunteer and employment opportunities for students, part-time workers and professionally trained carers, increase quality of care with standard training for all, provide for multiple financial situations (free, funded contracts, parent contribution)all centralized through a Service Coordinator. Community support organizations would pay to use the service for their client families, training programs could offer their services for a fee, community businesses could offer 'perks' for parents and care givers alike. A One-Stop Shop.

I took our brainstorming results, pulled together a proposal and budget...(in my 'spare' time) and phoned the executive director of the most logical existing choice for a 'home' for this service. I wanted a meeting, but there were changes happening in the service and timing was off. I was sent away to get numbers of people in the community and a budget. That was a year ago. Along with the numbers of families whose child requires one-on-one care I ALSO followed up on a hunch that and placed an announcement on several websites of our local university (I call it, CommUniversity Connections - connecting student volunteers with families who need support for their child.)

I now have a list of 35 names of university students who are desperate to obtain a required 70 hours of volunteer work in their area in order to apply for the Masters programs in physio, speech, and occupational therapies. (Was it the Dalai lama that said we need to realize that we are interdependent?) This list will offer a 'jump-start' to the 'home' of a Community Caregiver Service. While using university students has its down side as they inevitably move on, it is one RENEWABLE SOURCE of caregivers.(You want to make sure they send their resume, three letters of recommendation, current First Aid and CPR, and a current Criminal Records Check.)

The last piece would be the funding of a Coordinator and administrative support person to screen, interview and do the matching of students to families - a two-year grant may just fit the bill to get a service like this on its legs and off to a good start.
I am facing the rest of my life with the prospect of having to find, train and employ caregivers. My motivation is definitely personal in seeking a source of caregivers through the establishment of a new community service. But when I think of the enormous relief something like this will afford all families, the responsibility can shift to a place where interdependence is recognized and modeled. And, everyone can live happily ever after. Well, that may be a bit of a stretch. But I DO plan on carrying on with my personal dreams – become a professional development presenter on ionclusive education and the best …fling paint!

Carol said...


Thanks for sharing your story. It's so interesting to learn how moms in Canada deal with our similar issues. Good luck with your CommUniversity - what a great idea. I love the idea of university caregivers as renewable resources. Let us know how it evolves!