Susan's Blog

Monday, October 31, 2011

What I’d ask Nat

I often feel troubled by not understanding Nat and his state of mind.  I do not believe in my heart that what you see is what you get. I wish I could. People say, “If he doesn’t seem unhappy, he’s not.” Yes, but no. Sometimes I am not satisfied with that. So here is what I want to ask him:

1) Do you understand what I say when I speak normally?

2) If so, do you feel bad when I adapt what I’m saying to a simpler language?

3) Do you know that I respect you, no matter how I talk to you?

4) Are you lonely?

5) Do you feel left out when everyone around you is talking? Or maybe you’re used to it by now?

6) Do you understand why we are planning your life without really asking you how you feel about it?

7) Do you wish that you and Ben were close?

8) Do you feel Max reaching out in his quiet wispy way?

9) What do you want for your birthday?

10) Have you ever been abused?

And so today I had a bad moment on my bike ride, a real heart bruise, when I thought of these, and I wanted you to let me know, somehow. But I know you can’t, and so I have to live with that.


The unanswered questions we have for our children are the hardest things to deal with.

— added by Ed P. on Monday, October 31, 2011 at 2:00 pm

As usual, you sum it right up, and I can’t think of anything more to say.

— added by Alice on Monday, October 31, 2011 at 2:30 pm

My daughter is only 3 1/2 and I’m already struggling with not knowing just what she knows and understands. That part is really hard.

— added by Christine Zorn on Monday, October 31, 2011 at 2:30 pm

Remember when we discussed “silly speak”. I was reading a book on AAC and the author mentioned that echolalia to an autistic person may represent one word. The SLP for the AAC agrees. I as a parent that has used echolalia to become joint attention/speach also concur.

You need to start AAC. ABA does not push AAC. ABA trains… period. It does not teach.

You’d get those answers you are looking for. My youngest can “talk”… like when I informed him yesterday that since he refused to stay in the yard I got “Mommy be quiet”. Ask him what he did today at school “blank”. Gotta love autism… not.

We’ve opted to start with low tech since he can “mand” and “talk”. Like this morning “It’s hallowe’en!!!” That got shouted with lots of giggles. Our flipbook has 300+ words. We’re working on sentence building since he uses a lot of one to 3 word phrases… and answering WH questions. But you can start with as many words as you like.

It’s amazing what he can and cannot say. Cannot and cannot answer. But what is vary obvious to all of us is that he understands full sentences. He watches, he mimics, he responds appropriately. Even when he can’t respond during bowling in all the confusion and noise. He watches when you show him how to hold the ball. Mimics the stance. And gutters it 80% of the time. BUT, even so… he loves every minute of it. Big grin, big flutters, lots of bouncing.

Autistic children need to learn communication first, not ABA training. You cannot “fix” behaviour, you cannot be part of a group, you cannot learn… if you don’t communicate. Being able to mimic the motions just makes you a trained robot IMO.

— added by farmwifetwo on Monday, October 31, 2011 at 2:59 pm

I, too, am not an ABA junkie. I see its uses and I see its limits. What has helped Nat get this far in terms of talking is our ability to connect with him somehow, to form an emotional connection with him. I’d never say that everyone should follow any technique; different people learn differently, just as autism is different in every single person. Some autistics improve in many ways on particular diets. Some with ABA. Some with RDI/Floortime. Some with AAC, PECs, or a combo of all. I feel that Nat’s communication skills are blooming but right now these are questions that he would not be able to answer. And there is no guarantee that he ever would, with any technique. Some people have a much stronger degree of autism than others. I am so glad that your guy is doing so well! That is great news!

— added by Susan Senator on Monday, October 31, 2011 at 3:05 pm

This is such a poignant post. I wish you could have those answers too.

— added by Stimey on Monday, October 31, 2011 at 3:29 pm

This really sums it up. Thanks for posting.

— added by Jana on Monday, October 31, 2011 at 5:19 pm

I wonder what my son thinks when people just “disappear” from his life. Like the old therapists that he loves but choose to move. Or even my husband who could go on a business trip for a week and my son never asks for him…and he adores his dad!! So I just have to keep talking about Daddy so he doesn’t worry…. But does he worry; does he wonder what is going on when Daddy doesn’t come home at night?

And as for the therspists, years later he will say “So and so is coming” over and over again. He is still wondering where that therapist is and why they are gone. Well, at least that’s what I assume he is thinking. I feel so bad that no matter what I say to him, he doesn’t seem to understand at all.

Then suddenly, two weeks ago, my father — my son’s grandfather– died. I can’t even begin to think about what he will make of this. People seem to leave. And he never knows why.

— added by RB on Monday, October 31, 2011 at 5:38 pm

Real ABA does teach. I know that I teach, I’ve seen the results over and over again. It is not simply training, if that is what you’ve seen, then it has not been done correctly. I work with a wonderful little girl. At first, we taught her to answer questions that seemed rote, at the time. Once she learned the answers, she was able to be more a part of her regular ed class because when a child asked her something, she could answer. And she did need to learn not to scream and tantrum all the time. There is no way to learn to communicate in a functional manner if one is screaming and crying. This child has a real joy for learning, when I go to her home, she throws herself into my arms because we have a bond which was built over time. We don’t sit at a table and drill, at all. Once she had the basics, we were able to move into learning through play. She has learned so much, sitting on my lap, waiting for the bouncing and head stands that come along with it. ABA can be very natural seeming, and the easier it becomes for a child to learn, the less formal it is. I’m sorry that your (farmwife two) experience was so negative, I would not have been doing this for over 30 years if I didn’t believe in it. It is fun for me too!

— added by Michele on Monday, October 31, 2011 at 6:20 pm

I have had some of the same thoughts. As my son has gotten older, he’s gotten much better at expressing himself and often surprises me with what he is thinking about. Like, the day after his dad died: “Are we financially sound? Are you going to remarry?” or the first Super Bowl Sunday after his dad died: “Do you think they watch the Super Bowl in Heaven?” For a long time we assumed because he didn’t appear to be listening that he wasn’t listening. I’ve learned that’s not always the case. If he were able to communicate, you might be surprised by what Nat had to say. I wish he were able to do so.

— added by Caryn Sullivan on Monday, October 31, 2011 at 8:27 pm

This post is very moving. I want to say something, but I can’t find the right words.

— added by Stephanie on Tuesday, November 1, 2011 at 3:48 am

I am the father of 3 boys. My son Austin is my youngest @ 14. Now he is on the spectrom with PDD, and has come a long way with his speach.
I would ask, is there anything you would ask me about?

— added by Bob David on Thursday, December 8, 2011 at 9:23 am

I am able to pick up on my sons emotions because I know him so well. Its almost as if he dont have to speak. But you are so right. There are things that you have to ask to know. I worry too about ‘dumbing’ stuff down for Jordan. If he understands fully, Im treating him as if he is stupid. We all know Autism doesnt mean you are stupid by no means.

— added by demi on Thursday, December 8, 2011 at 9:36 am

I understand so well what you expressed here, Susan. No matter what communication progress my son makes, I am am not sure he could answer those questions. Not now anyway. *sigh* Sending you hugs for your heart bruise.

— added by Niksmom on Thursday, December 8, 2011 at 9:47 am

I too have a daughter with autism.Altho she IS verbal,communication,is often hard.She has difficulty,putting her thoughts and words out for us,to know.however,she can do so much better with a computer,and that is her preferred means of doing so.I have been reading,since she was diagnosed,at age 6(shes 11 now)and many more people with autism use this method.I am just wondering,if you have tried it with your child?If not,is it something you feel might be of any help?My daughter took classes to learn how to use a computer,and within 6 wks,was almost a pro.Perhaps,it would be worth a shot?e it helps.Jut know your daughter LOVES you,and her family.She wants to please you,and has only to find her niche,and things will fall into place.

— added by Jody on Thursday, December 8, 2011 at 9:48 am

hi susan, you didnt mention how old your son is. My son is 12, and up until last April I was looking for those same answers. My son began using Facililated Communication at school, and now does it with me at home. I have learned so much about his feelings. If you dont know what FC is, it is communicating thru typing. Ive learned he knows the words but cannot get himself to arrange them in order to speak. It gets too confusing for him to arrange and get them out. He types what he needs to speak. We have learned that he does understand everything that is being said to him, and knows how much we care about him and love him. His feelings are no different from any other child, he does sometimes feel left out when my other children are doing things that he cannot because it is difficult for him socially. We speak to him as we do our other (3) children, and have always shown great affection towards him. My main concern for him was always because he was “different” did he know it? Or was he just in his own world and was happy there and what was going on around him with other children not a concern for him. Unfortunately, it is a concern for him, that was the most heartbreaking thing for me to learn from him. I just always wanted to know he was happy, but i found that is not always the case. He feels the tension and rejection from other children who do not understand him. This year for his birthday was the first time he was able to tell me thru FC what he wanted, it was his best birthday ever ! and he has given me a list for Christmas this year. FC has been such a blessing for us. I hope that you can look into it, and it works for your son. If you want further information or someone (an expert) to contact, email me and I will get you in touch with someone who can help you understand it better. Kim (

— added by Kim on Thursday, December 8, 2011 at 9:54 am

So many questions. Not nearly enough answers. It is the tie that binds us all, isn’t it? Though our children have different ages, interests, challenges, in essence, autisms. It is this one thread that is woven into all of our lives…too many questions, not enough answers. Your piece is simple, understated, but incredibly moving. Thank you so very much for sharing your stories with us all through your blog, books, and speaking engagements. Thank you.

— added by Aimee Velazquez on Thursday, December 8, 2011 at 9:59 am

I feel your pain. I have a 7 yr old autistic boy who does not speak and I am always wondering what he is thinking. Always yerning for that one on one conversation with him. The one thing that bothers me the most is never hearing my son say “I love you mommy” He has times that he just melts down and starts crying and all I can do is cuddle him and try to comfort him without ever knowing what is truly wrong with him. Hopefuly someday these little guys will start talking and be able to tell us how they feel and what they want.

— added by Kim on Thursday, December 8, 2011 at 10:10 am

Beautifully touching. I have the same questions. I think the most heartbreaking one is about whether or not they have been abused. I appreciate your blog. Thanks for sharing.

— added by Christine on Thursday, December 8, 2011 at 10:55 am

Try the IPad for communication. It may not work for everyone, but there is an application that helps with ASD children to “talk” through the computer and may be able to answer your questions…. I watched an eppisode on TV (I think it was 20 Minutes) on ASD children and IPAD’s. When those kids were able to push buttons on it and the IPAD spoke their thoughts – Their little eyes lit up! Brought tears to my eyes!

— added by Tracie on Thursday, December 8, 2011 at 11:07 am

I have a 6 &1/2 year old son & I pray for the day that we can have a conversation & for him to understand concepts. Hoping one day he could tell me how school was or how he is feeling rather than just scripting or telling me he wants food item or toy.

— added by becky on Thursday, December 8, 2011 at 12:38 pm

l am a 72 year old man and have raised four great daughters. l have friends and relatives that have autistic children. So l realize how fortunate l am that l bad no handicaps with my children. l’ve seen just a glimpse into their lives and l must say that l can think of no one that deserves more respect than the parent of a handicapped child. These people, as well as their caretakers have my ultimate and sincere respect for the good job you have done! God will shine his brightest light upon you l am sure!

— added by Robert Litman on Thursday, December 8, 2011 at 12:59 pm

ask and ye shall recieve….my name is steve horton i can tell you what the doctors cant or wont. i turn 60 on the 19th of december 2011. i have something to say if you want to hear it. i have (cured myself from paranoid schitzophernia….manic depression… obsessive compulsive disorder…mental retardation…personality defect…adhd the diagnoses go on and on. i found out something….do any of you want to hear it? lets put it this way…if i was diagnosed back in the day with autism it would no longer be a part of my life. i am not a doctor nor do i desire to be one. i just want to help. some are scared of me…thats because i am a realist and i speak the truth. i will respond only if asked. there is a lot of work that needs to be done in this field that is not being done. i have some answers…the doctors dont like my answers. remember this…there is a cure for everything and i have a ton of stuff to share but only if you have the passion to want to hear it. i am working on a small video…an introduction to what i do and why i do it. i will be posting it on facebook and you tube soon. i have a program called ”THE PHYSICS OF LIFE” get out of recovery and into recovered. i have put an enormous amount of time and effort in to this program. i teach the indivdual to become the power and the energy and how to escape and graduate from what ails them. if no one responds to this i understand. i have been told i am to bold. i was just turned down from scripps newspapers for an article i wanted to do, i am used to rejection. one lady says to me, steve my autistic child is really in there somewhere i can feel it, i told her that she needs to teach him how to find himself so he can get out of his own way and so far the doctors have not done a very good job of teaching that. the doctors do not make money on wellness…they make there money on illness. cures dont bring money to the table. my program is a dvd series and it is still in the construction process. but seeing the frustration and heart felt concern from confused parents on this blog i felt i would do anything to help the situation. i am not a doctor…i am a janitor. thanks. 772-224-0706 remember what i teach is not about the disease or disorder its about the person and how willing they are to want to totaly recover they have to be taught what comes natural to us. these kids are big time smarter that we think. i know how to bring that out. i have not just done the extensive research that i teach, i live it…any takers? quick story….i got custody of my son stephen when he was 7. he was diagnosed tourette syndrome, obsessive compulsive disorder, paranoid schitzophrenia, bipolar disorder, adhd, personality disorder and he was let out of the psycho ward and turned over to me the odd part is he is not my blood, he was adopted. and he was on seriquill a horrible drug that a 7 year old does not belong on. he was a special needs child….. guess what? he is 14 now and 100% cured, no more voices in his head telling him what to do. thats right cured, no special needs classes, no depression he is in seventh grade getting good grades and just made the honor roll. ask him and he will tell you his story. no more seriquill i got him off that horrible drug the first two weeks i got him. one of the side effects of that drug is perminant involuntary tics and uncontrolable movements. what doctor in his right mind would prescribe that to a tourette patient i got him off just in time. i worked extensivly with him with extreme patients. day in and day out. now what if one of those diagnoses would have been autism? nothing would have been different. remember its not about the disorder, it goes way deeper that that. did you notice that autism, asburgers or down syndrome children are really good at what they like or want to do…video games for example. well we need to take that energy and transform it to life skills and speach and so on, i know how to do that. have i struck a chord with anyone yet? my son stephen skyler horton is on facebook. feel free to become a facebook friend and ask him anything you desire. the hardest part for my son to overcome was the voices in the head of schitzophrenia telling him what to do. he has mastered that and the voices are now silent. the voices are very busy in the autistic child and the child needs to know that and how to not listen to them. listen carfully….(the voices are running the show in your child)…this is probably the most vital thing as a parent to know and teach. if you share my teachings with your doctor you will probably hear the words quack or snake oil salesman i am used to it. my snake oil is better than theres and my quack is louder. my son takes part in my program with me. we are going to change the world…well if the world wants to change. i am off to work have a wonderfull christmas. i know i need to work on my writing skills i hope this all makes sense to any of you. thanks. steve horton sr and jr.

— added by steve horton on Thursday, December 8, 2011 at 2:58 pm

I work in a preschool 3-4 inclusion class. I am also a 57 year old mother of two young men 20 and 23. Until i became an aid in these classes I had worked only with profound handicapped, drug abuse and homeless. I now have had a few autistic children and find them to be the most expressive people i have ever had the pleasure of working with.

When they come into our school most are in their own world and can’t seem to see the world outside of their heads. The first time you get eye contact and see the person in there fighting to see you, is an awesome moment. When you realize that their stemming is just their way of shutting out too much input … Once you sit and engage in their world you see what they see.

Fan fan fan fan …. is one child’s way of saying hi, I like that thing, do you see it too.. at first all anyone wanted was for him to stop saying fan… well he changed that for flag,flag,flag… and would carry around our magnetic F’s or straws (only the bendable kind)in each hand. This same child knew all of the Alphabet and knew numbers up to thirty, at 4 years old. You could hold up any number(up to 30) or letter and he would say it and then go back to whatever he was doing. He also knew all of his shapes and colors. Yet he couldn’t seem to get who was who (I am miss so and so and this person is miss this) We all became one name or mom or dad.

He since has gone to another class.A few weeks ago he saw me in the hallway and called me by name … not some generic name he was speaking to me , he then added fan, fan, fan, flag, flag, flag I responded Hi,(his name), fan, flag f. He laughed and ran off to be with his friends, looking over his shoulder all the time looking into my eyes. that was a silly conversation filled with love and understanding. fan,fan, fan…flag … Hi , I know you , we share a history do you remember me, i do you. My fan, flag, F … not only do I remember you, I remember what is special to you.

All people speak in code, All speech is code. With that all said, I believe autism is just a new code which we are learning to break down slowly. with your wonderful love and insight working so hard to see beyond what is known we are able to work hard at helping your children come to join us.

Thank you for these wonderful people.

— added by cheryl sosa on Thursday, December 8, 2011 at 6:36 pm