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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...."

@ihatediabetes Thanks for sharing this very heartfelt story with us! Teresa

God bless you and your son!

ihatediabetes, I have seen some Downs syndrome adults working at Children’s hospital in the cafeteria stocking the eating utensils. They do have job coaches that enable them to work outside the shelter. The man I saw was totally intent on his job and did not perform what a supervisor I once had called “chin music” which is simply too much verbal visiting.

Thank you for sharing your trials with us. It can be difficult to live through this type of experience. When my son was severely injured the social workers int he hospital came to me 2 days post accident and tried to demand I place him into foster care as it might be too difficult for me to work and care for him. He has never been in any place except home and 10 months of recovery in hospital.

Your story tugs at my heartstrings. We don’t know what we are getting when we have children. I have a similar story and so I empathize with your situation. God bless you and your son.

Thanks everyone. I have my son at dentist now. Then we go for haircut. I picked him up at center aka adult day program to run errands. Our semi annual meeting is Thursday. That’s when county and providers come to talk about what’s going on. These meetings are stressful to me. I’m sure we are going to talk about my son participating on work crews and what to do about bathroom accidents. I was actually thinking of looking into Depends just because my son will be away from center and he will be standing up for awhile. He is learning to run dishwasher in a college cafeteria in Minneapolis. That’s what I mean about needing to put out so much effort just to do something people take for granted. All this so my son can try working in community for a few dollars in spending money. The alternative is staying in center all day long.

Hello @ihatediabetes I applaud your efforts! I can only say my wife had to use depends and they were a godsend for her!

Worth looking into I would think!

Peace and strength

Reading your experiences as caregivers, nurtures my soul. Specially those who take care of children. Children have been close to my heart since I was a child myself. It took me to pursue a teaching degree, and to work with low income children in Mexico City. What made me very strong during my ordeal with mouth cancer, was to think of the little children that have to go through cancer and other ailments, sometimes since they are born.

And now, to think of you, care givers, that have to be right there, day in and day out! You are true heroes. True Saints.

With respect and admiration, Loli

My husband has had incontinence issues since Prostrate surgery in 1991, that have progressively gotten worse since he is now diagnosed with Alzheimer’s Disease and vascular dementia since suffering several small strokes over the last 2 years. He wears depends and gets along well with them. They have made things so much easier especially at night when he has the most difficulty.

It is a great plan. Yes, Depends sound great. Best to prevent a mess.

@ihatediabetes The use of Depends sounds like it would be a help to your son as he steps out into the community without the worry of accidents that would be embarrassing to him. Your ability to be flexible is inspiring to everyone who is a caregiver. You are doing a great job! Thanks for continuing to share your story with us. Teresa