Re: HALO-HBO-RPM-Soma

[Guest guest]

Thank you Trina, I have forward this as well, sharing away. ; )Gotta love Soma!God Bless her for all she does, for such a gift is such a Blessing for many of our kiddos of all ages. Never would of believed it until my mouth drops when she works with my son & several of my friends kids/adults who are dx'd w/severe AU or related disorders & non-vocal.  

Irma

 

This interview was sent to me this morning I am excited to share it with you. I am also sending you the website for the movie " A Mother's Courage-Talking back to Autism " which was shown recently on HBO and has HALO and Soma and Temple Grandin featured. It's inspiring to know there is a way to reach our children. ALL our children and it could not come soon enough and Soma will tell you " It is never too late to learn " .

 

www.amotherscourage.org

 

 

http://danaroc.com/inspiring_041910soma.html

 

 

[Guest guest]

Several kids at HALO are now learning to type or write independently too. Also don't forget that although the stories of a totally silent child are inspiring and miraculous so is that of children like my son who have speech. My son can talk, can answer simple one word questions but on the Letterboard with the use of RPM he writes so eloquently and so beautifully and of course tells all of us what he thinks of us and how we can improve! His dream is to learn to be a psychologist and he keeps asking to go see one he saw awhile back so he can analyze HER! Took her awhile to figure out he was leading her on to study her, then she finally said to me one day " Your son is manipulative " yup. Didn't need psychotherapy to figure that one out. We quit going.

Without Soma my son was in a AU class all day with 15 minutes of inclusion and a half hour for specials. WITH Soma and with using RPM we are fully included and on the honor roll. My son is trying to talk more and is now pointing and saying the words he points to on the letterboard. My goal this summer is to get him to type more. He CAN type but the connection from thought to typing is weak it will take many hours of practice but it can be done, Tito is an excellent example of what hard work can accomplish. Tito is most certainly Autistic and as Soma would say " So what? " he is a published author and is taking online college courses. I have very intelligent relatives who will never be as brilliant as Tito. One day we will look at people with Autism and say, I wish I had their gifts. This is wonderful thing to aspire to and is what gets me leaping out of bed each day.

 

Thank you Trina, I have forward this as well, sharing away. ; )Gotta love Soma!God Bless her for all she does, for such a gift is such a Blessing for many of our kiddos of all ages. Never would of believed it until my mouth drops when she works with my son & several of my friends kids/adults who are dx'd w/severe AU or related disorders & non-vocal.  

Irma

 

This interview was sent to me this morning I am excited to share it with you. I am also sending you the website for the movie " A Mother's Courage-Talking back to Autism " which was shown recently on HBO and has HALO and Soma and Temple Grandin featured. It's inspiring to know there is a way to reach our children. ALL our children and it could not come soon enough and Soma will tell you " It is never too late to learn " .

 

www.amotherscourage.org

 

 

http://danaroc.com/inspiring_041910soma.html

 

 

[Guest guest]

Trina, This is what I like as you have shared such an update on your son as many are such like snowflakes indeed. You can share in regards to about your son who can talk but such accomplishments with his abilities when given such an opportunity, this is GREAT!

As, I do share this about this is open to all & of course do not mention names but tell them a little about like your son. : )Remember most who are non-verbal, severe with autism or behavioral issues, or MR are only seen as money profit within the state for state institution mind frames. As told several times... " If they have the MR label, why waste the fund on them...just face it, they are never going to learn how to talk. "

So, here is one primary example of how to educate all those who represent for our individuals under the ASD or MR or etc., how much a person an educator like Soma can teach many who can have some form of communication & express & thensome.

Question asked by several committees which my friends & I have confronted is " How does one work w/those who have high-demands? Who require 1:1, but in this case, these individuals which I am speaking about are usually heavy medicated. Well, this becomes another chapter but figure I share this wee bit.

Anyways, just wish this type of RPM program could also benefit many even when that school bus stops. Because learning is never ending, even when the school bus stops.Many who represent autism, must be open to all & to all ages & to all levels of the ASD.

Glad there are options of programs to choose from.Here is wishing your son towards the goals you've mentioned on his typing skills, this is great & what a story to be a psychologist...ha ha analyze which he already does. Love it!

Irma

 

Several kids at HALO are now learning to type or write independently too. Also don't forget that although the stories of a totally silent child are inspiring and miraculous so is that of children like my son who have speech. My son can talk, can answer simple one word questions but on the Letterboard with the use of RPM he writes so eloquently and so beautifully and of course tells all of us what he thinks of us and how we can improve! His dream is to learn to be a psychologist and he keeps asking to go see one he saw awhile back so he can analyze HER! Took her awhile to figure out he was leading her on to study her, then she finally said to me one day " Your son is manipulative " yup. Didn't need psychotherapy to figure that one out. We quit going.

Without Soma my son was in a AU class all day with 15 minutes of inclusion and a half hour for specials. WITH Soma and with using RPM we are fully included and on the honor roll. My son is trying to talk more and is now pointing and saying the words he points to on the letterboard. My goal this summer is to get him to type more. He CAN type but the connection from thought to typing is weak it will take many hours of practice but it can be done, Tito is an excellent example of what hard work can accomplish. Tito is most certainly Autistic and as Soma would say " So what? " he is a published author and is taking online college courses. I have very intelligent relatives who will never be as brilliant as Tito. One day we will look at people with Autism and say, I wish I had their gifts. This is wonderful thing to aspire to and is what gets me leaping out of bed each day.

 

Thank you Trina, I have forward this as well, sharing away. ; )Gotta love Soma!God Bless her for all she does, for such a gift is such a Blessing for many of our kiddos of all ages. Never would of believed it until my mouth drops when she works with my son & several of my friends kids/adults who are dx'd w/severe AU or related disorders & non-vocal.  

Irma

 

This interview was sent to me this morning I am excited to share it with you. I am also sending you the website for the movie " A Mother's Courage-Talking back to Autism " which was shown recently on HBO and has HALO and Soma and Temple Grandin featured. It's inspiring to know there is a way to reach our children. ALL our children and it could not come soon enough and Soma will tell you " It is never too late to learn " .

 

www.amotherscourage.org

 

 

http://danaroc.com/inspiring_041910soma.html

 

 

[Guest guest]

Certainly speech answering is preferred. But do keep in mind it takes several sessions for a child to point out on a letterboard the kind of stories and insight that come over time. Does your child point out the same answer he can verbally express? Matt's first sessions were very basic despite the fact that he could speak. This year he has written a book review on " How the West was Won " which is not something he could do verbally. Eventually I would like to see the speech match the pointing but would be happy if he could type it too. Kids with verbal skills are more challenging because you have to compete with the verbal ability which in some cases gets in the way of learning. If your child is not on grade level even if they have speech then I would recommend RPM as a appropriate method to teach academics. You can teach speech separately or incorporate it with the pointing or typing. I wanted to make this point because I too waited and felt as you do. But when my child was not making progress at school and I was being told he was functioning on a K-1st level I knew I had to try something else. Everyone is excited that my child can speak but if we relied soley on his verbal ability and you asked him for instance what is 2x6 he may not answer or he may answer with whatever number he is thinking of that day. On the letterboard he can do algebra there is a definite disconnect between thought and speech regardless of whether you have some or none. Soma can give you the science behind it, hopefully she will respond I know she reads the TAA list. Call me anytime if you want to hear more about how we got Matt where he is and how he did on state testing....

Trina

 

I do believe what I saw with non-verbal kids was inspiring, but for our high-functioning child who has speech, we just were not sold on it.  It didn't inspire us, but I would recommend it for a child without speech.  I am still thinking of incorporating a modified version into what we do for our son, but it would allow him to answer verbally rather than point.

[Guest guest]

Certainly! Group time at HALO is a time when all the kids can interact with each other. Matt participates in a older group of 12-20+ year old students. They talk about politics, growing up, business, religion, the opposite sex, goals, you name it. My child will greet a friend verbally but will not sit down and talk about Obama's speech last night. During group time he does. They also sometimes talk about Autism and what they have in common or don't have in common with each other. They support each other and offer advice to each other which is very touching to see. Group time is my sons favorite part of the week and he looks forward to it and writes it on his calendar in case MOM forgets. He never forgets. One of my favorite stories about verbal kids at group was when one child who is older and quite verbal was drawing a picture to remain calm and focused. Matt knew this student did not like people touching his art so of course Matt just HAD to see his reaction. Matt touched the picture to try to take it away and the student said " What the !@#$% & *! Soooo funny. They then went on to talk about something else but this does go to show that our kids can be funny and really enjoy being around each other. When GIRLS come to group? It's a lot of pointing about who is showing off and who is more talented etc. The girls have a lot to choose from it's fun to watch the boys try so hard to be impressive. My hope is to do this kind of speech group at school with NT kids and Matt using the letterboard. They may be surprised to learn he has more to talk about than movie clips and animals. Matt is also starting to speak what he points out in paragraphs so he can write a story or answer questions others have and then speak them. When I get the video of him talking about going to high school back from his teacher I'll post it on you-tube. I love to hear him talk but without RPM this kind of I-movie would never have happened.

 

 

Trina, How about the social circle time, this is huge too for those who have accomplished this level. Share this as well. Irma

 

Certainly speech answering is preferred. But do keep in mind it takes several sessions for a child to point out on a letterboard the kind of stories and insight that come over time. Does your child point out the same answer he can verbally express? Matt's first sessions were very basic despite the fact that he could speak. This year he has written a book review on " How the West was Won " which is not something he could do verbally. Eventually I would like to see the speech match the pointing but would be happy if he could type it too. Kids with verbal skills are more challenging because you have to compete with the verbal ability which in some cases gets in the way of learning. If your child is not on grade level even if they have speech then I would recommend RPM as a appropriate method to teach academics. You can teach speech separately or incorporate it with the pointing or typing. I wanted to make this point because I too waited and felt as you do. But when my child was not making progress at school and I was being told he was functioning on a K-1st level I knew I had to try something else. Everyone is excited that my child can speak but if we relied soley on his verbal ability and you asked him for instance what is 2x6 he may not answer or he may answer with whatever number he is thinking of that day. On the letterboard he can do algebra there is a definite disconnect between thought and speech regardless of whether you have some or none. Soma can give you the science behind it, hopefully she will respond I know she reads the TAA list. Call me anytime if you want to hear more about how we got Matt where he is and how he did on state testing....

Trina

 

I do believe what I saw with non-verbal kids was inspiring, but for our high-functioning child who has speech, we just were not sold on it.  It didn't inspire us, but I would recommend it for a child without speech.  I am still thinking of incorporating a modified version into what we do for our son, but it would allow him to answer verbally rather than point.

__.

[Guest guest]

Trina:I see your point, but at this point in our interventions, when we are looking at an expensive intervention --and it is expensive by our standard when you have to also include travel and hotel and the cost of therapy and training, we needed to see something that would convince us that it turned a light on for our child and was worth the investment. AND our district is refusing to excuse the absences for going!  They won't excuse them unless we get a medical doctor to write and say he told us to go

[Guest guest]

Trina,That is great. when I hear these things it makes me want to keep trying, especially the part about dong it at home.  Is the manual different form the book??  The book I have explains how to do it.  I understand that.  I have the letter and number boards.  We will try tomorrow as he is now out another day with cellulitis in addition to the strep.

I didn't say TAKS was not evidence of learning.  It all depends on who the test administrator is.  I was saying that I do not trust his school's administration of the test.  If I give it at home and he passes it, then I'd believe.  If his educational psychologist administered it, i would believe.  Will I believe passing results on the one the school is about to give?  No. Unfortunately there are educators who will lie to keep their rating.  Taks scores are tied to school funding.  Too much conflict of interest there to trust that, and they have lied to us so many times about so many things, but YES, TAKS is a good measure when given appropriately and honestly.  But as far as our district is concerned we sent a letter a long time ago that we will only accept proof of progress through testing done by his educational psychologist.

I don't think being a zealot is a bad thing when you believe in something as you do.  It is because of your discourse that I will try again.  My husband and I talked about it and our son has auditory processing disorder.  In our observation, we felt that our son was having a hard time understanding the auditory cues, so he looked pretty lost. We are thinking if we keep trying at home, he might do better with it.  

[Guest guest]

Yes, I wish I could do all my sessions for free. But HALO is a non profit organization and my session fee sees to its keep and my salary. But certainly, when I win that lottery, I would do a free-for-all project. Of course we have our choices. When my son was diagnosed in India with Autism, he looked lost too. I am glad I did not trust the doctors who told me 'he looks lost' and 'has auditory processing trouble'. I chose to trust him. I knew there is a sensory delay in expressing a social expression in Autism. So I realized the difference between 'social understanding' vs 'social expression' - one is cognitive the other is motor. Because I can 'teach' the cognitive part, I began to teach him academics. I had no clue that I would have to name it RPM one day.

Speech producing area in our brain is in the right side of our hemisphere where as the language area - Broca and Wernicke areas are in the left side. If there is an underconnectity of neurons, language may scream inside and the speech sound may just be the rote learned - muscle memory speech. I may want to say, 'The flower looks pretty' but my voice would say -'I want DVD' and when I hear my voice saying something else, I may get scared and anxious, not trusting my own voice that is betraying my thoughts. And if I am scared and anxious all the time, every time, I would be frustrated. No one has to trust a 'method'. As long as we trust our children and let them know - 'You may look lost, you may seem in your world, but I know you are there.' I have spend a big part of my time typing this email because the chain was getting a little

hurtful - not towards me but for a whole community of Autistic people who talk and who are not believed. And because I type with one finger as I cannot do better, I wish that everyone understand that and hopefully we end this discussion here. We all have good things to do all day. - Soma MukhopadhyayTo: Texas-Autism-Advocacy Sent: Thu, 22 April, 2010 1:18:32Subject: Re: HALO-HBO-RPM-Soma

Trina,That is great. when I hear these things it makes me want to keep trying, especially the part about dong it at home. Is the manual different form the book?? The book I have explains how to do it. I understand that. I have the letter and number boards. We will try tomorrow as he is now out another day with cellulitis in addition to the strep.

I didn't say TAKS was not evidence of learning. It all depends on who the test administrator is. I was saying that I do not trust his school's administration of the test. If I give it at home and he passes it, then I'd believe. If his educational psychologist administered it, i would believe. Will I believe passing results on the one the school is about to give? No. Unfortunately there are educators who will lie to keep their rating. Taks scores are tied to school funding. Too much conflict of interest there to trust that, and they have lied to us so many times about so many things, but YES, TAKS is a good measure when given appropriately and honestly. But as far as our district is concerned we sent a letter a long time ago that we will only accept proof of progress through testing done by his educational psychologist.

I don't think being a zealot is a bad thing when you believe in something as you do. It is because of your discourse that I will try again. My husband and I talked about it and our son has auditory processing disorder. In our observation, we felt that our son was having a hard time understanding the auditory cues, so he looked pretty lost. We are thinking if we keep trying at home, he might do better with it.

[Guest guest]

Hi Haven,

I wasn't sure from your post whether your child actually had a session at HALO, or if you just observed some sessions there. Could you clarify?

Thanks and I see your point about choosing interventions for our children. I, like you, don't choose every one that I hear about. I'm simply not able.

Although, we did go to HALO once and had 2 sessions. My son is what I guess I would describe as partially verbal and high-functioning (if we have to use that term - I hate it!!) PDD-NOS. We saw a, the apprentice, and she did an amazing job with Jay. We never followed up, being busy trying to set up our ABA program at the time, and serious lack of money for interventions.

I think I'll dust off the DVD of our sessions and look at them again. Also, maybe get around to reading the manual, finally, since I'm beginning to be very frustrated (and I'm sure Jay is) with his inability to communicate with us.

By the way, thanks to your post a couple months ago, we just got our voucher in for a Dynavox. I'm not sure how that would go with RPM, but I would love to find a way to use the Dynavox to do RPM. Is that even possible?

Marilyn

[Guest guest]

Hi Marilyn,We just got our voucher for a Dynavox also, I would like to stay in touch to discuss how you use yours with RPM. My daughter is low functioning non verbal but can operate a VCR!! I know she has lots to say and can't wait until she is able to tell us. Haven, My son is HFA and we will try RPM with him as well. I will contact you when we see how it works. I just ordered the book and have summer sessions scheduled. We are all searching and I appreciate the different viewpoints. Is anyone else ready for summer break??I am so tired of dealing with mean people at ISD. Homebound services are looking better and better. One boy was threatened with a weapon and got 3 days ISS. When he came back he again said I SHOULD HAVE STABBED YOU WHEN I HAD THE CHANCE! Still in class with the victim and my son. Lawyers are the only way they take us seriously. Sorry for the rantDate: Thu, 22 Apr 2010 06:05:23 -0500To: <Texas-Autism-Advocacy >Subject: Re: Re: HALO-HBO-RPM-Soma Hi Haven, I wasn't sure from your post whether your child actually had a session at HALO, or if you just observed some sessions there. Could you clarify? Thanks and I see your point about choosing interventions for our children. I, like you, don't choose every one that I hear about. I'm simply not able. Although, we did go to HALO once and had 2 sessions. My son is what I guess I would describe as partially verbal and high-functioning (if we have to use that term - I hate it!!) PDD-NOS. We saw a, the apprentice, and she did an amazing job with Jay. We never followed up, being busy trying to set up our ABA program at the time, and serious lack of money for interventions. I think I'll dust off the DVD of our sessions and look at them again. Also, maybe get around to reading the manual, finally, since I'm beginning to be very frustrated (and I'm sure Jay is) with his inability to communicate with us. By the way, thanks to your post a couple months ago, we just got our voucher in for a Dynavox. I'm not sure how that would go with RPM, but I would love to find a way to use the Dynavox to do RPM. Is that even possible? Marilyn

[Guest guest]

Doug and Kim,

would love to stay in touch. Feel free to email me directly at marilyna@... anytime.

So you have two children with autism? Wow!

Sorry you're having problems with the school. That is truly frightening.

With our son, he's always the aggressor and I feel sorry for the other kids who have to bear the brunt of it. Of course, he's only 5 and has never threatened anyone with a weapon, thank the Lord. Hope things get better.

Marilyn

[Guest guest]

Kim,Thank you for taking my comments as they were intended.  But I regret I will not be able to discuss RPM objectively on this list, so as you do it with your HFA child, keep in touch off-list.  I never said I wasn't going to continue to try it with my son.  But as I was accused of not knowing enough to  even have an opinion about its use with my child; likewise, no one there knew my child or discussed what he knew or was capable of before the sessions.  I would have like to be able to offer four IEP objectives and see how he did on these, but we will try this at home.

[Guest guest]

Marilyn:Thank you for your support and kind words.  All I ever said was I didn't " SEE " what others saw happening with their children, and now I have gotten my head bit off and now I am accused of saying hurtful things to the entire autism community.   I will NEVER discuss RPM with anyone on list again after this.

I said one thing about our experience with OUR child and you would have thought I shot someone.  I have recommended RPM to some parents, but I tell parents to research and read the book and get knowledgeable first. 

 I observed one session with a boy and was impressed. I read the book TWICE and took notes.  I viewed many clips and researched on the web. Then on another trip, we had four sessions with SOMA, and no, I certainly don't expect her to do the sessions for free, but anyone who thinks parents should not consider the cost of any intervention before becoming invested in it.....that got me accused of wanting it for free, which is untrue, but If I don't want to spend $1000 dollars a piece on several trips to Austin, I think I have that right, and I was looking for comments to come back to me that would have made me WANT to do so.  Sadly that was not the case.

It is sad that due to my comments that people think I am " against " RPM. I am NOT. They should have taken it for what it was --just an opinion that stated I would have to see something more to believe in it for MY child. Now I'm being told that I'm just not seeing clearly enough.  So, enough!  I will not speak about RPM again here.  If anyone wants to hear alternative opinions on it or cautious opinions, they will have to find another list.  Those who want to say, " Hey, but I didn't see... " best go elsewhere or risk being crucified.

For anyone who suggests that I have been hurtful to the whole autism community by expressing one cautious opinion is wrong.  Thank you to all of you who appreciate different opinions and don't get offended by hearing a slightly different viewpoint.

As far as I am concerned, this is the end of it.  Trina, If you are willing to keep to discussing RPM with me, so that someday I may see what you see, I'd appreciate it, but we will need to discuss it off-list.  I would be afraid to ask any questions or make any comments on-list.  If you feel that you would become angry if I don't see all positives and need to ask questions and have more clarified, then I will keep trying on my own.  I do appreciate everything you have discussed with me, and I would like to be able to ask you further questions regarding how it is used in the school setting for your son. 

God Bless.