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Scott, Volunteer Mentor (@IndianaScott)

Love and Caregiving...

Caregivers | Last Active: Apr 26, 2017 | Replies (27)

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My story of caregiving is having a baby boy. My husband and I were very happy. But over time he didn’t develop. The doctors started calling my son “developmentally delayed.” At the time it didn’t mean anything to me. Delayed means that eventually you catch up. But for my son he just didn’t develop like other children do. Then social workers started to visit me. And they used the term “failure to thrive.” I didn’t know what that meant either. Then people came over with instructions for how to communicate with my son. They showed me diagrams and gave me tips. Then I found out we had a staffing at child protection. That’s where social workers invite pediatrician, social workers, and parent to a meeting. They say failure to thrive is mother’s fault. Something about mother’s communication style. So I went to meeting and found out they were blaming me for son’s development. That hurt. But pediatrician said its the child, not mom. Then I eventually took son to Mayo Clinic. Diagnosis was Williams Syndrome which is genetic abnormality with small size and developmental delay. Lifelong support necessary. So that solved problem with child protection and failure to thrive. But then I had new problem called developmental disability. My son wasn’t going to catch up. So I have been caregiving for my son for 25 years with no end in sight. I can only survive day by day week by week year by year. I made another post in caregiving about hoping son can have opportunity to work on job crew and not get restricted to center. It seems like so much effort is needed to just get the smallest thing – an opportunity to be in community with everyone else.

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Replies to "My story of caregiving is having a baby boy. My husband and I were very happy...."

Hi everyone, I am going to California to visit daughter. She’s little sister of the 25 year old son I have been talking about on mayo connect. I was thinking that another kind of caregiver is the brothers and sisters of children with disabilities. I was thinking that my daughter tried to help with her brother eventhough she was just a little kid. We would be in a restaurant and my son would be walking around talking to everyone. My daughter got my son to leave by running up and saying she was going to sit in the front seat. That got my son riled up and he ran out to car so he could sit in the front seat. She had all these tricks to help manage her older brother. She also used to apologize to people and explain to grown ups that her brother has a disability. But she was only ten years old. She was a child caregiver. I think they are hidden caregivers.

Some of them are and they are wonderful caregivers. Your daughter must really love her older brother a lot.

@ihatediabetes What a lovely tribute to your daughter’s caring nature! Thanks for sharing that and I hope that you have a lovely trip to California. Teresa

Hi @ihatediabetes What a gem you have in your daughter! Yes, a hidden caregiver indeed!

Enjoy California and your time with her!

Peace and strength

Thanks everyone. First I have to get through semi annual meeting at day program. It’s today. Btw I did go to Walmart last night and picked up package of Depends for men. They are grey in color. Thank goodness they aren’t white. That would be too feminine. I also bought some disposable washcloths. They were right by the Depends. So I did learn something about what people are buying for incontinence. Yes, my daughter is a gem. Having a brother with disability really made her grow up thinking about people with special needs. There are so many kids growing up with parents that are ill or siblings that are disabled. I think they are unsung heros. And they’re just kids.

Good luck today! I will be thinking about you!

I agree, One of the few benefits of caregiving I have seen as well has been the empathy it instilled in our young grandsons. After their experiences helping their grandma and seeing what she needed, how she changed, etc. they truly understand not all good people are ‘normal’ and they are not to be feared, mocked, etc.

Gems for sure!

Strength and peace, @ihatediabetes

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