Last year I received an e-mail from Sarah in Australia who informed me that she would like to share her adult brother, Bradley's, ACC story. I was very excited to receive a second e-mail from Sarah in February (telling her brother's story). With her brother's permission (and her help writing) I am very honored and so grateful to be able to share Bradley's ACC Story here with you.
Updated on March 31, 2013
~~Written by Bradley's Sister~~
Bradley and his sister, Sarah, on his 21st birthday
I'd like to hear from some other families who care for a person with this type of severity.
At the time of Brad's diagnosis there was 4 known cases in Australia. A lot of people confuse Brad's ACC with cerebral palsy. His speech is impaired and physically his feet are tense and will not flex. He wears orthotics with shoes when walking and also canadian sticks -- (below)
He sometimes has accidents with wetting the bed. This has improved greatly with age. But sometimes needs reminding/asking.
Overall Brad is a very happy young adult. He has a great memory. He is an attention seeker and can sometimes get angry if things don't go his own way.
Bradley turned 21 on 29th September 2012. Brad's ACC is quite severe compared to some of the stories on the blog.
but cannot stand up straight. He bends over and his knees still bend in. He has had two operations to try to straighten his legs.
About 6 months, Brad's reactions were slow. Brad received services from a physio, speech and occupational therapist prior to school.
What did you struggle with in school?
Attention span and concentration.
What did you enjoy most and do well at in school?
Enjoyed the library and borrowing books.
Did you struggle with social skills in school?
Not at all - loves attention and willing to talk to anyone even though his speech is impaired.
Did you make friends easily in school?
Yes he has many friends from his special needs unit at school.
Do you still struggle today with social skills as an adult?
Now that Brad has finished school he stays in touch with friends from school and made new friends at his day program.
Did you attend a mainstream classroom?
They had a separate classroom but integrated with other kids during lunch breaks.
Can you ride a bike and drive a car?
Brad could ride a modified bike during primary school Age 5-9. Brad cannot drive. Brad's first operation to straighten his legs was at 13 and the next operation was at 15. After his second operation the pressure on his knees was too much and therefore resulted in Brad spending 95% of time in his wheelchair.
Did you attend college? Did you get a degree?
No and No.
Do you have a job and if so what do you do?
No. Brad attends a program 4 days a week and does hydro therapy once a *fortnight. *[every two weeks]
Are you married? Single?
Brad is single but has a close girl friend Nicole that he visits often.
Do you have children?
No.
How does ACC affect you today as an adult?
Effects his life everyday. He can feed himself and transfer from his wheelchair into a car or onto a toilet seat. But he cannot shower himself, brush his own teeth, dress himself, cook for himself, etc.
What do you enjoy doing the most in life...
Playing bowling on the Wii sports, Playing with his Ipad. Cooking books.
I asked Sarah a couple of questions in regard to a few of her replies above:
1. You wrote that Brad really likes cooking books. I'm curious if he likes to read them or just look at the photos in the cooking books or what intrigues him?
Brad loves looking at the photos and he wants people to help him make the recipes. He can't read but recently he has been watching YouTube videos and asking people to write down the recipes to help him cook.
2. You mentioned that Brad is very social and loves to interact with people but has difficulty because his speech is impaired. I am wondering if Brad's main form of communication is verbal or if he possibly uses another method of communication (in addition to his verbal speech), if I may ask? And, if so, what type of other speech/communication method/device does he use to help him communicate with friends and other people?
No he only uses speech but after spending some time with him you can generally start to understand him. Sometimes you have to guess other words that sound like it and he will let you know if it is correct. He uses an ipad and can usually show photos of his latest outings so people can understand where he's been and what he's talking about.
What are you passionate about?
His dog (toy poodle) Bailey, Enjoying food with family and visiting friends, taking photos and swimming.
Do you have a specific goal or dream that you are passionate about and would like to achieve?
To go overseas to Hawaii.
If you are an adult who has ACC or a corpus callosum
QUESTIONS & ANSWERS:
When did you find out that you have ACC? How old?
Bradley and his dog, Bailey
Bradley, 21 years old (written by his sister, Sarah)
February 19, 2013
Australia
Sarah expressed an interest in hearing from other families who care for a grown child with ACC who have similarities with her brother, Bradley.
If you would like to contact Sarah, you can leave a comment here for her. Or you are welcome to email Sarah.
In addition, if you would like to post a message for Bradley in regard to his ACC Story, please leave a comment for Bradley.
They would both enjoy hearing from you.
disorder, do you want to
share
your story?
Each person is unique. Every story is welcome and
every story is worthy.
I would love to hear from you. Please send me
an e-mail
THank you so much for sharing your story. my son is almost 3 and a half, and is very developmentally delayed. he doesn't interact much yet, though has started smiling and giggling much more frequently which is exciting. He also is very similar to a child with CP. We don't know what the future holds, but appreciate you sharing your story!
ReplyDeleteMy son Danny, is 24, he is non verbal, still in diapers but can walk and feed himself. He loves to watch us play with the wii. He is starting to tell us what he wants using his ipad. He loves being around other people but is kinda shy when they talk to him. He loves the pool also. We went to Hawaii a few years ago and he loved it.
ReplyDeleteMargie in CA
Molly is a severe case of C-ACC and has Cp- Spastic diplegia. Some affecting her arms hypotonal to her core. She was cognitively and physically able of 2 mos old for two years. it wasn't until she was 3 that we saw development being met or happening. She is 5 just started to take steps independently. uses a walker and wheel chair still. She can talk but not typical dialogue. very verbal. Wants to be independent. Sensory is apparent. We are in Mass near Boston. We have had 5 rounds of Botox to her legs. 1 eye surgery. She has 4th nerve palsy ONH/SOD but not endocrine problems. You can find us on Good Golly Miss Molly on FB problems
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