As a parent of a child with special needs I had to modify my family’s life. I had to adapt in my skills as a parent and I had to learn to communicate with an endless amount of providers. I never thought of myself as anything more than his parent but I remember the first time someone called me my child’s “care provider”, and I remember correcting them. “No I don’t do that, I am his mom.” All I received in return was a smile, then a pause, then a reassurance that I am his care provider all the same. I now needed to modify the way I saw my role in his life.
I had to think about this, and I looked it up too. A care provider (in my mind) was a physician, a nurse, a social worker, a certified person who delivered certain skills. Then I uncovered more information. A care provider also delivered other things like; cleaning, cooking, hygiene help, dressing and comfort or support. I guess as a parent I am caregiver, we all are. Cool! Another thing to add to my parent resume.
This was kind of awkward though because I have now classified myself as an important part of my child’s care circle, but I do not give myself the same allowances. I expect my physician to take vacations, to call in when sick, to take a break. I listen to the nurses telling each other about treating a sunburn earned while jogging with a friend this weekend. I understand the need for stress reduction classes and tips for social workers and hospice workers. So why is it that when I am burned out, I have a hard time admitting it? (I actually hide it). Why do I have a hard time accepting help?
I know no one can care for my child like me, (even though each person gives him something different, including a break from me). Why do I push through when I am sick? If I stay sick I am no good to anyone. This list could go on forever…
I think part of it is guilt. I chose to be a parent, I asked for this. I shouldn’t complain or need for anything because it is, after all, something I asked for. I think part of it is love. I want my loved one to happy, well, successful, accepted. I admit part of it is selfish. If I consume most of it, I not only get to be in control but I get most of the good outcomes too, the smiles, the hugs, the random sentences and I crave those moments.
There are some incredible gifts attached to being a care provider. I love spending time with my loved ones, and I am pleased that I can be a support to the people I care for. I have learned to not take the small things so seriously, I can relax with my child in the most simple of tasks and find true bliss. I know he is in safe hands when he is with me. I know he loves me and while a lot of people his age go through stages where their parents are uncool, he has never been unhappy to see me or to spend time with me. I have learned to appreciate every accomplishment, seeing him work so hard has taught me to be at peace with time and spent energy. I get to watch cartoons forever! Okay, it may be the same ones over and over but it could be worse, he could like clowns 🙂
In the end I found 5 simple truths.
1) If I accept the title of being a caregiver for someone I love, than I must also accept the responsibilities of caring for myself so that when I am on, I am on 100 percent for the people I love.
2) I must accept that I am human and pushing does not make me a better caregiver.
3) If I truly love the person I am caring for, I must allow them to adapt to other people. To hopefully learn to trust others, to try new or different things on occasion and sometimes to just be.
4) I have to admit that I may not always be in charge of his care. By preparing my loved one and other people who choose to care for him, I am allowing growth for his future. As a parent, isn’t that the goal for all of our children?
5) That caring for myself is natural, needed and beneficial, especially for the healthy child/parent relationship that I crave above everything else. I wouldn’t trade my role for the world.
Written by: Darlene Coleman, Mother and Volunteer at the Down Syndrome-Autism Connection.
Disclaimer: The Arc Arapahoe & Douglas Counties does not endorse or recommend any service, therapy, provider, etc., discussed in this post. This blog is for information purposes only and reflects the opinion of the author.
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