#specialneedsfamily – Conversation for Change

Caregiver Burnout: Understand it. Prevent it.

Caregiver burnout is a state of physical, emotional, and mental exhaustion. It may be accompanied by a change in attitude, from positive and caring to negative and unconcerned. Burnout can occur when caregivers don’t get the help they need, or if they try to do more than they are able, physically, emotionally, or financially. ManyContinue reading “Caregiver Burnout: Understand it. Prevent it.”

Making Time to Connect

This last week was incredible. I had the opportunity to connect with friends and family in person. There is something magical about getting together and sharing a meal, a meditation, a walk, a story. It is incredible when the experience fuels your soul and fills your cup. I was blessed to have several energizing interactionsContinue reading “Making Time to Connect”

Just Don’t Quit

How have we made it work? How has our relationship lasted for over 36 years? There is no magic or secret sauce. The answer is simply not giving up on each other. We both refuse to quit.

The Suck In Being Stuck Together

Emily needs a life outside of the house with her peers. She needs people other than mom interacting with her. At the end of the day, I want us to delight in being around each other. I want to not only love each other but like each other again. I want to find the end of suck in the stuck together spiral we have been swirling in for months.

Celebration Minus Expectation

I threw away the manual on milestones and expectations for Emily’s progress and achievements. I started to practice acceptance and release control.

Glass Children, Mom Guilt, and GRACE

Glass child is a term used to describe the sibling of a person with a disability. The word glass reflects that often others see right through the typical sibling and focus only on the person with the disability.

Don’t Tell Her She’s Just a Van

Just in case you ever get a chance to meet her, please don’t tell her she is “just a van”. She believes she is so much more.

Wonderful But Not Restful Trip

Friday morning came too soon. I woke up exhausted. Emily was to go to school on the bus. I knew there was a 50/50 chance the bus would not show up and it did not. I loaded everything into my car and off to school we drove. I started crying on the way. I was tired and had reached a point of breaking down. At that moment, I realized that the trip had been fun, but it was also a lot of work. Todd and I had cared for Emily for the past 18 days with no help. She had trouble sleeping. She had panic attacks during every aspect of hygiene from bathing to toileting. She refused to help with transitional walking. My hips and body were sore and stiff from long hours sitting in the car and sharing a bed with Emily. My self-care had taken a back seat during the trip and I was feeling the results.

Bumps in the Road and Holding Hands

All my husband wanted for Father’s Day was to go camping for the weekend. He planned the location and we got to prepare for the trip. We would have Emily with us so we decided to take the trailer. It was also going to be warm so having the AC inside the trailer would beContinue reading “Bumps in the Road and Holding Hands”

Question Your B.S. (Belief System)

I challenge you to try a new way of looking at things. Dare to question your belief system. Decide if it is useful to keep. Embrace a new belief or redefine a word in your life. It could be the start of amazing discovery for you and those you love.