ATHEISTS WITH SPECIAL NEEDS DEPENDENTS

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Comment by Jim Mo. on April 9, 2011 at 5:24pm

I was able to see "Wretches and Jabberers" in a theatre on April 2, 2011. Having a 12-year-old son on the spectrum, the film moved me in ways that were beyond my expectations. It is not a film about Autism being cured. It is a film about finding the inner lives of autistics and their struggles to communicate. The film brought me to tears. I highly recommend it to those facing the struggle of caring for ASD individuals.

Comment by Wanderer on January 10, 2011 at 4:07pm

I have a 4 year old son with what is thought to be PDD (pervasive developmental disorder). It is like Autism, with some differences. He has two younger brothers who are perfectly healthy. They talk and play and socialize expertly, while the oldest hardly speaks at all. When he does speak it is only the names of animals, and not well. He was receiving speech therapy and ABA when he was about 3, and it had seemed to be working somewhat as he had started speaking more and more, but we had to leave the country for my wife's job in Saudi Arabia and with no services there his language began to slip away. He is also very private and has some aggression problems. He fights with his brothers often for no reason and even took to biting and hair pulling occasionally. We are now back in the states since November, but he hasn't been receiving help because according to state law the school has 20 days to begin evaluation and then another 90 days to finish evaluation. Meanwhile his condition continues to deteriorate. He has a final evaluation at the end of this month (January), and is due to begin receiving services in February. I wish I knew why they couldn't start giving him services when we got here and worked out the evaluation process as they went along. My wife will have to leave to go back to Saudi Arabia in a few days, leaving me with all 3 boys and no help from any family or friends. I think I will be able to manage, but its tough.

 

Has anyone else had any experience with PDD? I feel like it is probably caused more by environmental factors than genetic, more so than Autism is (but I'm just guessing). I also feel like there isn't nearly enough research into either the causes or the treatments of these diseases.

Comment by Becky Williamson on August 26, 2010 at 3:27am

I have a 6 year old son who has Jarcho-Levin syndrome aka spondylocostatal dysplasia. This means he has severe scholiosis and malformed ribs. Basicly he doesn't have room in his chest for his lungs to grow. There's lots of side effects but the list is so long I would probably take up a whole page listing them. I just wanted to know if anyone on here has a child with this or something similar.

Comment by Gwen on September 25, 2009 at 5:31am

My brother definately livens our days! He is very loving, and his interpretations of life are usually an 'out of the mouth of babes' moments!

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

@Gwen.

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').

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