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.