Looking for feedback on the book 'The Reason I Jump'

[BraysMom]

Hello,
I'm the mother of a 10 yr old daughter with autism. She attends a private school with the help of a part time aide. Has anyone read 'The Reason I Jump'? I'm interested in the opinions of people on the spectrum regarding this book. I know that it's from the view of a 13 yr old boy using an augmented communication device and has also been translated into English from Japanese.

 

[Myway]

Welcome to AC.

 

[Blast off]

I live in Japan, I have read the book. I feel that it is both the combination of a special mind and a loving mothers creation, but I am not so sure what comes from the son or the mother's point of view. I also have an autistic son and I am an aspie. Its very hard to say what's going on inside my son's special little brain, but I would like to think (and also makes me sad), that there's so much going on inside his mind that he just cannot communicate. I suffer from the same issues on a much lesser degree. He is completely non verbal, but very vocal. He's trying to communicate, but the wiring isn't there, so it comes out in shrieks, screams, and repetitive vocalizations that only his mother and I can seem to discern. Who is to say what is going on inside the minds of a severely autistic person? I wish I knew, because I'd love to hear what my son is thinking more clearly.

 

[Warmheart]

Naoki has written more. He is an accomplished artist and advocate, as well. Want to see him begin his advocacy work, shown in a film?

Check out the film "Wretches and Jabberers." There is a version on YouTube.

 

[Blast off]

Naoki has written more. He is an accomplished artist and advocate, as well. Want to see him begin his advocacy work, shown in a film?

Check out the film "Wretches and Jabberers." There is a version on YouTube.

Thanks for your input Warmheart and beautiful Shepard in your profile photo. I can only seem to find trailers for Wretches and Jabberers on YouTube, is there any way you could post a link for it? The trailers alone brought tears to my eyes and I can only dream that someday my son can communicate like they can.

 

[pax]

I got it out on talking book a couple years ago and enjoyed it.

 

[xudo]

Welcome

 

[Warmheart]

Adam, these men us FC--Facilitated Communication. That just means that they type their thoughts, and a support staff worker keeps his/her hand on their shoulder or arm to help the types stay focused.
(Nobody types for them... just a steadying hand on the back, shoulder, or arm allows them to remain present in this world enough to focus to type.)

Adam, I use AAC. It is an app on my iPad which helps me talk. It looks like pictures. I poke the pictures, and they "speak" for me through my iPad.
The AAC app I use is called TalkTablet.
It is so simple to use, even I can design pages myself!
I use it to talk for me at a restaurant to order lunch.
I use it at a doctor, to say what hurts.
Try looking up Talk Tablet for your son.

As for Wretches and Jabberers, if you keep looking, you will find the full movie on YouTube, but the time counter is left in the screeen. Best of luck! That's how I enjoyed watching it.

 

[toothless]

I live in Japan, I have read the book. I feel that it is both the combination of a special mind and a loving mothers creation, but I am not so sure what comes from the son or the mother's point of view. I also have a 4 year old autistic son and I am an aspie. Its very hard to say what's going on inside my son's special little brain, but I would like to think (and also makes me sad), that there's so much going on inside his mind that he just cannot communicate. I suffer from the same issues on a much lesser degree. He is completely non verbal, but very vocal. He's trying to communicate, but the wiring isn't there, so it comes out in shrieks, screams, and repetitive vocalizations that only his mother and I can seem to discern. Who is to say what is going on inside the minds of a severely autistic person? I wish I knew, because I'd love to hear what my son is thinking more clearly.

your welcome to ask me any questions adam kep,i grew up severely classic autistic and only just stabilised as moderate when i reached my late twenties after 4 months of daily intensive therapies including SALT,ABA[totally disagreed with it in my case] and SIT.
i am now 32 and have my own apartment in a care facility but i have constant 24/7 1-1 support,up until last january i had been on 2-1 support which makes me feel much more free-er away from humans and ive achieved a lot of good things in my life,they told my mum and dad i would never leave their care and when they died id be institutionalised for the rest of my life.

i make videos to help people,some of them about being LFA i am not being arrogant but i suggest having a look at my videos which were my own experiences on what the more severe end of autism is like.

 

[Warmheart]

Adam, @toothless is amazing. She only began to speak in her 20s. Her YouTube vids are incredibly informative! Plus, she gives of herself-- often-- here online, considering other peoples' struggles, and offers her solutions and support. She's brilliant, kind, funny, giving, and understanding. More than once I've seen her swoop in and up.ift someone who has been struggling. People count on her insights.

Adam, during the times I am unable to speak at all, I can still think, reason, and understand what is happening. My responses might look very different due to overwhelm, but, I'm still very much " in here," very much a person. I am sure your beautiful son is as insightful, creative, and intelligent as his amazing Dad. Just offering you some encouragement. You are a super father, and your bright little boy has lots of good ahead of him.

 

[Blast off]

Adam, these men us FC--Facilitated Communication. That just means that they type their thoughts, and a support staff worker keeps his/her hand on their shoulder or arm to help the types stay focused.
(Nobody types for them... just a steadying hand on the back, shoulder, or arm allows them to remain present in this world enough to focus to type.)

Adam, I use AAC. It is an app on my iPad which helps me talk. It looks like pictures. I poke the pictures, and they "speak" for me through my iPad.
The AAC app I use is called TalkTablet.
It is so simple to use, even I can design pages myself!
I use it to talk for me at a restaurant to order lunch.
I use it at a doctor, to say what hurts.
Try looking up Talk Tablet for your son.

As for Wretches and Jabberers, if you keep looking, you will find the full movie on YouTube, but the time counter is left in the screeen. Best of luck! That's how I enjoyed watching it.

Wow, Warmheart! Thank you for the information ! I get so nervous and worried about my son's future if he cannot communicate, especially once I'm not around anymore to interpret for him. (Even then I don't know 100% that I know what he's trying to say). I will look up Talk Tablet and try to use it with him. He has concentration issues, so will be a challenge, but once he realizes he can communicate,maybe he will be able to concentrate more. I would literally cry my eyes out (from happiness)if I could ever hear him say papa or I love you.
As far as your story, you give me lots of hope that my son can have a bright future ahead of him, if I can give him the right tools. Being in Japan its a little difficult to get him the care and therapy he requires (which is sad, because there are so many of us aspies and autistic people). If I were back home maybe there would be more for him. We do our best though and every day I see small new things that make me so happy to see. Just pointing for him was HUGE, now he does it all the time. (Usually for food, or the swing). He also started to point upwards if he wants me to pick him up.
Thank you for the message and the hope you have given me!

 

[toothless]

Adam, @toothless is amazing. She only began to speak in her 20s. Her YouTube vids are incredibly informative! Plus, she gives of herself-- often-- here online, considering other peoples' struggles, and offers her solutions and support. She's brilliant, kind, funny, giving, and understanding. More than once I've seen her swoop in and up.ift someone who has been struggling. People count on her insights.

@Warmheart you are awesome thankyou so much for making a absolutely crap day feel better!

 

[Blast off]

your welcome to ask me any questions adam kep,i grew up severely classic autistic and only just stabilised as moderate when i reached my late twenties after 4 months of daily intensive therapies including SALT,ABA[totally disagreed with it in my case] and SIT.
i am now 32 and have my own apartment in a care facility but i have constant 24/7 1-1 support,up until last january i had been on 2-1 support which makes me feel much more free-er away from humans and ive achieved a lot of good things in my life,they told my mum and dad i would never leave their care and when they died id be institutionalised for the rest of my life.

i make videos to help people,some of them about being LFA i am not being arrogant but i suggest having a look at my videos which were my own experiences on what the more severe end of autism is like.

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!!

 

[Warmheart]

Adam, Amy Sequenzia is a really cool non-verbal autistic woman who is very much impacted by her neurology, needing help sometimes to eat and use the bathroom, plus other aspects of self care, yet.. She blogs an amazing blog, at nonspeakingautisticspeaking. She rocks! She is a leading advocate for change in the autistic community. Her spectacularly brilliant mind and wonderfully zesty personality lead the good fight for all of us, as she makes a powerful impact. Anyway, check out ollibean.com for more of Amy's insightful writings.

If you purchase TalkTablet, it is about $80 usd. Teach him to use it in very, very short lessons... Maybe 5 seconds at a time, depending n his attention span.

It is easy and intuitive to set up. ( I am pretty impaired with attention, and I managed to set my TalkTablet up a bit every day.) You can use it right away to talk with, though! Your son might love it!

My first sentence was... "I want corn chips and chocolate." Ha! Typical!

That is how we learn. Short lessons, then you give us the snack we asked for.

Your son will get the idea!

We scream be abuse we are frustrated trying to communicate. An AAC app like TalkTablet gives us a voice!

Check out TalkTablet on YouTube. It is soooooo easy!

 

[toothless]

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.