Once again I'm crying (in a good way). I am amazed by your story and I will indeed watch your videos. I want to do everything possible to help my son. Helping him also helps me learn about my own self as well. My struggles are nothing compared to what he faces though (and that scares the crap out of me).. It is so good to see that there is so much hope for him and his future. I worry every day all the time about what will happen when his mother and I pass. The last thing in the world I want for him is to be institutionalized. Thank you so much for the hope you've given me!!
hi adam,if you would like to ask anything at all please feel free as it is my passion to help people understand autism and intellectual disability.
my last video was of one of my support staff [she works next door most of the time with people with MH conditions],i interviewed her on her understanding of autism [as a whole] and intellectual disability,hopefully,if by the time your son is an adult and he happens to need support staff of his own,he would have someone like laura,she knows nothing beyond what ive taught her on autism and intellectual disability but shes got a big open mind to help her approach anyone regardless of their label,thats what we need.
in terms of communication,i strongly recommend teaching your son makaton and PECS,i found and still find-these life changing, i also recommend proloquo2go on an ipad,i also used this while in residential care to communicate and it was incredible,it made something like PECS much faster,i struggled with getting to the symbol i wanted as there were quite a few steps to it but im hoping to go back to it now when i can afford a ipad and proloquo.
in terms of the book/the reason i jump,ive got it and read it and enjoyed seeing another non verbal autistics view as there arent many out there in books,however i dont relate to the young lad as he doesnt have intellectual disability [i have mild ID] which flavours how our autism presents,our functioning and how we think.
one person i do relate more to is tito mukhopadhyay,a once profoundly autistic gentleman i strongly recommend getting a hold of some of his books.
unfortunately as a boy he was suckered in by autism speaks when they were very pro curist and they made his life to look like hell and commended his mother for forcing him to speak with a special type of therapy and live in reality and not his own world,he he is an incredible role model for severe and profound autistics he has done so much since appearing on tv years ago [i first saw his documentary on sky tv teacher channel many years ago] to me life as a severely autistic non verbal person is life,it is neutral there was no hell for me i didnt know any different,i love my autism it gives me so many good things.
my head was my safe space away from other people when i absorbed into my own world i still resent those specialists bringing me out of it with daily intensive and acute ABA just so my behaviors wouldnt be so unpleasant for other people.
ironically i now live in hell,i am no longer the oblivious one living mentally away from people i am forced to reach out to others, i am forced to speak when i am verbally impaired and people think my echolalia is a challenging behavior and some staff will tell me to sit in the backseat of the car if im echolalic as they think im suddenly going to attack them.
being verbal is the biggest challenge of my life,i cant tolerate it and i hope to get an ipad and proloquo2go-an awesome AAC app i used to use, it makes me physically and mentally ill because of the overload from trying to build language in my visual only orientated head.
