A support group for those who care for or live with a person with special needs: genetic, acquired, physical, cognitive, psychiatric, dementia, ADHD, Autism, etc.

Members: 37
Latest Activity: Aug 21, 2016

Some cartoons to lighten the load a little.

Discussion Forum

Anyone there?

Started by Amy B Feb 18, 2015. 0 Replies

What to do when there's no TIME?

Started by Taran Meyer Oct 29, 2010. 0 Replies

So who's your special needs guy/girl?

Started by LeoPardus. Last reply by Taran Meyer Oct 21, 2010. 56 Replies

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Comment by Rosemary LYNDALL WEMM on September 20, 2009 at 1:31am

Hi and welcome. Yes, it's Down's Syndrome kids are a double whammy for older parents: your risk of having them is much greater and your ability to care for them is less. :-(
Comment by LeoPardus on September 19, 2009 at 6:12pm
I like your perspective Gwen
Comment by Gwen on September 19, 2009 at 3:24pm
Mike: as far as "less than daily life threatening situations" (LOL-great wording) you begin to appreciate the small things! I really didn't think my 'normal' son would live to adulthood, he has potentially life ending allergies and was run to various hospitals 'code 3' 6 times by the time he was 6 and once again (thankfully the last time) when he was 17.

People would express sympathy for me when I tell them I am the caretaker for a special needs adult. I tell them that :
My brother will never:
be arrested...for anything...ever!
be anything but a cheerful and loving man
ask to borrow the car
ask me to buy something for him because it is 'only' $150.00
....and I can go on and on...
I also tell people that their child/husband/loved one is just a head injury away from being a special needs adult. I have seen it happen in my social circle.
Comment by LeoPardus on September 19, 2009 at 9:42am
Gwen: You state my worry about my boy well. I really want one of his siblings to be ready to take him. He is such a happy guy. I'm sure he'd be a favorite uncle too. :)
Comment by LeoPardus on September 19, 2009 at 9:41am
Mike: Wow! Sounds like you're living in the midst of even more than we were with our boy the first 3 years of his life. He spent 10 months of those first 3 years in a hospital. Wifey and I were quite expert in several medical subspecialties. :)
Back then I was a believer and thought, "How could anyone without faith handle stuff like this?" You and all of us here are showing that it can indeed be done by atheists.
Oh, the arrogance of my former belief. Glad it's over.
Hope your girl continues to do well. ..... Maybe the the life-threatening situations down to less-than-daily.....
Comment by Gwen on September 19, 2009 at 6:46am
@ Rosemary, one issue with Down syndrome kids is that they are born to older parents. Those parents must then worry about what will happen to that child after the parents die. Some of these very vulnerable adults end up in group home and abusive situations. I have (as an RN) admitted Down Syndrome adults who have been introduced to drugs and alcohol and become addicted. There was a case in the bay area where the person who ran the group home thought it would be a good idea to take her charges to a club where some men enticed a young developementally delayed woman to leave with them. Since the group home has a very limited conservatorship over their charges, she was not able to prevent the woman from leaving. Only when it was put out on the news did them men release the woman, thankfully unharmed. My brother is lucky to have a sibling and nephews who will care for him for the rest of his life. I was lucky (when I applied for a conservatorship) to have a judge who agreed with the need to protect him to the limits my attorney and I felt necessary--against the wishes of the Regional Center (whose wishes the judge called 'inappropriate').
Comment by Mike Kleinman on September 19, 2009 at 5:52am
Hi, I'm Mike and my daughter Jessica is almost 11 and is profoundly disabled. She has severe CP, epilepsy, she's blind, and functions at a 0 - 6 month level. She is *relatively* easier to handle since she has not had life threatening situations 3 - 5 times a day lately. :) She is very lovable and understands basic stuff like she knows me and my wife, as opposed to not knowing others she doesn't come into contact with regularly. We have an endless parade of nurses and therapists in the house. But they are necessary to care for her. I've gotten used to it all after almost 11 years.
Comment by Gwen on September 19, 2009 at 3:35am
Hello, I am the caretaker for my youngest brother who has Down Syndrome. He holds down a full time job with assistance, but operates at the level of about a 4 year old. He is also very loving and keeps up in stitches with the hilarious things he says. I have to say that he is by far my favorite sibling and the favorite uncle to my (adult) children!
Comment by Rosemary LYNDALL WEMM on August 6, 2009 at 1:57pm

The advantage of Downs kids are that they are usually very affectionate. For a couple who have been desparately trying to have kids this feature of the disorder will no doubt be appreciated.
Comment by Sue B on August 6, 2009 at 1:38pm
Hi Rosemary

My step son & daughter in law have been married for 14 years and spent a year trying to get pregnant. My DIL was 39 and knew the risks and when one of the first ultrasounds came back with the possibility of a heart issue she had already decided that this was they're baby and that was that.

Fortunately the baby is as healthy as they come and being an only child of great parents I believe she's going to get the best in all respects. I've stocked their freezer with food and being as she's only 5 days old and Dad is home, other Grandmas, Aunts and cousins are around constantly I'm pretty sure everyone is going to be fine, I guess now it's just waiting for her to grow up...

As a childless person myself it's just crazy how little she is! (but perfect also) =-)

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