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How do I practically help a traumatised downs syndrome adult?


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Old 02-14-2015, 06:16 PM   #1
carrie39
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How do I practically help a traumatised downs syndrome adult?

I am currently living with a Downs Syndrome adult in his late 30s. I am his cousin. His parents are in their 70s and struggling to know how to manage his constant refrain that he is sad. He seems to say this even when he has had a good day, like it is a record he cannot get out of his head. However he has had some very traumatising experiences in the past including a period of deep depression. He is being medicated for this. His language is a bit limited so I'm not sure that a psychotherapy type approach could help me work through the trauma issue.

Does anyone have any practical suggestions for how we can work through this issue? Do we ignore or validate him? Do we just constantly attempt to distract him? Could I try some somatic therapy with him?

Does anyone have any ideas? Any at all?

 
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Old 02-15-2015, 10:04 AM   #2
MomOfDownsAutis
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Re: How do I practically help a traumatised downs syndrome adult?

Bless you for trying to help him and his parents. I know that caring for a down syndrome adult is challenging as my 22 year old son has downs and is autistic too. You are a blessing to his parents as I know they must be exhausted.
My son also has been showing more signs of depression as he ages. I feel for him as he has no siblings or friends to interact with and I know he is very lonely. Most 22 year olds are always out with their friends and are busy working and doing things, but I think my son feels trapped inside his body as he relies on me for 24/7 care. He is on a much lower functioning level than a typical person with downs at his age, due to the autism. I believe this is why he is depressed. He does still go to school, but graduates this June and I am looking for a day program that he will enjoy that includes activities and basketball. He loves basketball!! I am constantly looking for activities that he may be interested in and recently received respite that provides a caregiver twice a week that provides companionship for him and gives me a little break. My son looks forward to those times as he seems to enjoy his new male companion to play basketball and interact with. Having that "right" respite caregiver is very important as not all caregivers "connected" with him in the past, so we had stopped using respite until recently when I realized that I had to find the right person that he would enjoy being with and I think I've found him. He is two years older than my son so I think it helps them to connect. I wish he could have more daily time with his respite caregiver but we are only allowed 24 hours a month through our Regional Center.
Another factor to consider in depression- My son had been on medications for 12+ years for behavior and insomnia but they were no longer working and were causing more serious side effects (some that are now permanent, Tardive dyskinesia, etc.) so we took him off all medications this last December. When he was on meds, he looked like he was in a constant state of fog that kept getting worse until we stopped them. His doctor also felt it was best as he had exhausted all meds available, except a last resort medication who's serious side effect was "Death". That's when I said- "NO". No more meds for depression or behavior.
After he had been off medications for a month, we realized he still needed something to help with his mood. Since January we have been trying a CBD tincture that seems to be helping with his overall mood without putting him in a constant state of fog. He also sleeps better too! Now I see more of my "real" son as he looks into my eyes like he is more mentally alert. Although he is still going through the withdrawal process from the depression/antipsychotic medications he took for many years, he seems to be in a better mood more often since taking CBD. He also communicates and responds more too! I hope this more natural medication continues to help him as it does not have the dangerous side effects like the pharmaceutical drugs have. I have heard how CBD has helped other families with similar challenges and his doctor recommended it as well. Finding the right CBD and dosage is trial and error for each person as it is still a new treatment. For us it was worth a try as we had exhausted all options.
I am no expert, I'm just a mom. And I hope my experience helps your family too. Hugs to you and your family!

 
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Old 02-16-2015, 05:35 AM   #3
carrie39
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Re: How do I practically help a traumatised downs syndrome adult?

Thank you so much for taking the time to respond to my question. You gave me a lot of information and encouragement. Incidentally, I too have tardive dyskinesia from all the psych meds I've been loaded up with over the years... I am intrigued by your mention of CBD as a possible therapy, both for my cousin and myself. I've tried everything for my own condition and never heard of this. I'm guessing it's unavailable in Australia.

My cousin has a wonderful carer who takes him out three times a week but here too funding is very limited. Respite is no longer an option because he is so attached to his mum his behaviour when separated is considered unacceptable by the places he used to go to.

He loves mini-golf and does some gardening and at home has recently begun some quite amazing colouring in projects and he 'reads' through children's story books in the evenings. He watches a lot of DVDs with his parents.

I'm starting to think it is his resilience that needs to be built up. If he was of average IQ you'd send him along to have CBT but I'm not sure if he has enough insight to do something like this.

I wonder if anyone has ever put together a modified CBT type course for intellectually disabled people to increase their resillience to the small things that throw their mood rather wildly throughout the day?

Thank you again for responding. I really appreciate it.

 
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Old 02-19-2015, 12:54 PM   #4
MomOfDownsAutis
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Re: How do I practically help a traumatised downs syndrome adult?

Sorry for the delayed response- sometimes the time just fly's by and there's still too much to do!!!
It's sad that medications that seem to help one problem can also cause other problems as well. I wish I had researched the side effects earlier, that my son was experiencing (he's non-verbal so he couldn't tell me what he was feeling) but the main reason he was on meds was for aggression (which could get very scary sometimes as he is very strong) and for insomnia. I really hope the CBD will continue to help as each day I see a little more of my "real" son who is responding more and smiling again like he used to. I get CBD from Amazon as they have the best prices, you might check to see if you can access it there too.
Funny, my son actually likes going out without me- I think he gets bored with me as I am always working (I have a small online craft shop) or cleaning, cooking and he likes to get outside whenever someone offers. We do limit places we go to as he also gets overwhelmed by too many people and loud noises and will act out. He loves watching the Wiggles and the Imagination Movers as he loves music. He also loves riding on our special Tandem Tricycle, he just loves the sensation of gliding quietly through our neighborhood and it helps to put him in a good mood!
Behavior Modification Techniques are very helpful. We were blessed to have Behavior Modification Training "in home" for a year through our Regional Center and it really helped us recognize triggers and how to deal with behaviors. It was through a company called Autism Spectrum Therapies and it really helped me to communicate better with my son because I was able to understand his behaviors and triggers. We do still have challenging moments from time to time but they are less severe.
Is he verbal? Does he have a PECS communication book or device?

 
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