Whit with his caregiver Rich

Whit with his caregiver Rich

When Kathleen was little, I didn’t give much thought to having a caregiver.  Family helped whenever we needed someone to watch Kathleen.  We were also fortunate to have neighborhood babysitter right across the street and as soon as they were old enough, Kathleen’s sister and brother took over.  It was easy because everyone understood her language and her needs.

I was a stay at home mom until Kathleen entered 2nd grade.  Even then, I was home when Kathleen was home.  It wasn’t until she graduated from high school that we needed to find a caregiver.
Finding the right caregiver to watch our children is a difficult task.  When they are little, they are easier to carry, easier to handle and they are easier to distract.
But as they get older, frustrations begin to come through and behavior kicks in and it is a new situation on a daily basis.  They can throw things; break things, pull hair, and bite. Their strength is incredible and many times it takes two to move them away from their focus.  If you can see the tension starting to escalate, try and change the direction; move them to another room, change the subject, offer something they like.  Sometimes that can defuse the situation…sometimes not.
Sunna with Caregiver

Sunna with her Caregiver having fun

Our first caregiver was a young woman who had been Kathleen’s aide in high school.  When she left after two years, I tried several different avenues and ended up on the national website for caregivers.  I wrote down everything about Kathleen – good and bad.   I had many responses, talked by phone and then met in person.  It didn’t take long to find the right person but then she didn’t stay long either and we were again searching.  This time I ended up at an agency.  We went through several different women, trying to find the right fit.  After a few weeks, we ended up with a wonderful woman who stayed for a year.  When she decided to moved on, the agency sent replacements and it only took a about a week to find the right person.  So our previous caregiver trained the new one and we had a smooth transition.  We still have the same amazing, compassionate, wonderful aide today.

I have always spelled out all the different ways my daughter acts, for better or worse.  I make a list of all the ‘what if’ so that the caregiver is prepared.  The list includes what do to if the ‘what if’ happens.  I stress that not only does my daughter have to be safe but so does the caregiver.
Lisa with Caregiver2

Lisa with her caregiver taking Selfies

We have had several situations over the years….one’s I don’t like to think about or share but I have also come to understand that no matter how much I prepare my caregivers, I can’t think of everything and no one can predict how our child might feel at that moment.

I know that many of you have spoken of the behavior your child has exhibited and some of you are at your wit’s end.   Know that you are not alone…there are many of us who are experiencing the same thing as you and when you are in the midst of it, it can be daunting and devastating.  We are here for you!
Please share how you handle your child and prepare caregivers for behavior issues that may arise.  What type of resources do you use to find caregivers for your child?

2 Comments on “Caregivers

  1. My sister-in-law is in her early 30’s with AHC. I struggle mostly with feeling like I should be doing more for her, and realizing my optimism is falling on the ears of a family who have tried everything for their girl throughout her life but they now feel in a rut.

    Her anger and violence is an issue at the moment, with her parents often catching punches. There must be a reason behind her feelings, and a pattern to predicting these behaviors better…

    My in-laws are in their 60’s and are the full time caregivers for her. They say they can’t afford a full time carer, I worry that they can’t afford not to as it is impacting on their psychological well-being.

    Any suggestions?

    • Hi Louise,

      Where does your family live? We are in the states. I live in California and I went through an agency to find a caregiver. I do received funding from the state which helps offset the cost of the caregiver. My daughter is 26 and we needed to find a caregiver when my daughter finished school. It wasn’t easy however we have been blessed with some amazing caregivers who are wonderful with my daughter.
      Behavior is a huge issue with our kids – of all ages. It comes and goes but is so draining on the families.
      Depending where you are, we may know of a family in your location that we can connect you with.

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