caring for our caregivers
January 12, 2010
I was reminded today and yesterday in two different situations of how difficult it is for everyone involved in caring for or educating a child on the spectrum. It is so difficult for mothers. So much so that we either forget about how difficult it is for everyone else involved too, or we just don’t have the time or energy to reflect on how others are impacted by our child. We are just so darned focused on our child’s needs and so darned tired, we don’t even focus on our own needs let alone other caregivers.
I was talking to mutual friends of a mother of a child with autism (severely impacted) who is being cared for in a home with assisted living providers. We were talking about how stressful it was for the caregivers in the home when the mother was around and how the mother didn’t give enough kudos to the staff who were caring for her daughter day in and day out. Yet, every time the mother is there, she has something that needs to be addressed with regard to her daughters care. She has no choice but advocate for her daughter to make sure that her daughters needs are being met, and constantly. Her daughter, afterall, cannot speak for herself.
I felt so sorry for everyone involved with the situation. Empathy and respect for the mother who has so carefully advocated and cared for her daughter for 20+ years. Pain and sadness for the daughter who will never be able to care for herself or speak for herself. Compassion and gratitude for the caregivers who willingly take on the job of caring for people with disabilities of such complex nature.
Today I realized that even though my situation is so very different than this mothers, in many ways we are similar. I too have other caregivers that need to be reassured that they are doing a good job, that they are doing one of the toughest jobs in the world, and that they are making a positive impact on our child.
And, even though I will continue to be laser focused on my child’s needs and I will continue to be exhausted as all other mom’s on the spectrum are, somehow I need to build in to the plan (the 50 page plan!) reassurances and kudos for everyone who is so committed to my son. After all, my reassurances and kudos come in the way of those special snuggles I get every night from my son and knowing that I get to be the mother to the most special child in the world!
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