I never underestimate the ability of a child to learn even if they are non-verbal and seemingly without any receptive skills. Being 100% positive every day, 24/7 can be challenging but we have to have a strong faith that our children have not yet met their full potential no matter what anyone tells us.
When Daniel was diagnosed it took another year before he would utter his first echolalic word at the age of 3 1/2 and it would be another year before he would put two words together. He is now 13 and we usually get the 3 word requests such as "I want ___" or " ___ ___ please." After 9 years of the same patterned speech it's hard not to think the "window of opportunity" has shut and this is where we are and where we will most likely stay. Then something happens and you realize you've just seen that window that you thought may be closing opened right back up again.
We just recently experienced this in what was one of the most appropriate and heartfelt feelings Daniel has ever shared with us.
This all took place when I was cutting his fingernails after a bath. He sat on his bed next to me and I held his hand while we prepared to work through the weekly ritual. This evening he was a little on edge and I could see the anxiety rising to the surface. I calmly started to tell him, "It's ok, we will be done soon" and I began to count down 10, 9, 8,7 as I manicured each finger. He was clearly not comfortable and I asked him to breath in, breath out and to please try to calm down to which he replied, "I can't help myself" I was so surprised and although I was sad that he was feeling such anxiety at the moment I was ecstatic that he was able to convey this feeling.
So WOW!, at 13 he is still surprising us and it makes me excited for the future wondering what he has in store for us each and every day. We feel blessed!
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Comments (16)
You have every right to be pleased. That was a huge step for your son. Over the last several years I had been working with a totally non-verbal child who was about your sons age to help him gain communication skills through use of a vocal output device with a standard keyboard. He shared some remarkably thoughtful communications with me. You might try typing with him to encourage more communication. Whenever we worked together, I typed and spoke my share of the conversation so I showed respect for his means of communication while encouraging him to try mine. Unfortunately he is no longer my student (he aged out of my school); I really miss working with him.
@Elizabeth Wilson - Kudos to you in working so diligently to communicate with your student. I surely hope they continued with the keyboarding. The process can be long and people give up when they aren't served with immediate gratification but we can't give up. Even crying, grunting, groaning are forms of communication. So often they are dismissed as stims but we have to look harder at the context and possible functionality of these and other things such as echolalia.
This is going to seem self serving but Danny has used Disney phrases in the past to convey feelings. Other people dismiss the words because it is echolalic but it can be functional too. http://p1autismmom.blogspot.com/2009/09/animated-communication.html
Thank you for your comments and I again applaud you for your efforts & tinacity!!!
That's awesome =)
:D
Wow, that definitely is awesome! I'm so happy for you! :) I hope the future holds many, many more surprises like that for you and Daniel! :)
I don't like having my toenails cut either.
I can understand Daniel's agitation.
It's a wonder how we can allow knives or scissors near us when they are DANGEROUS and they CUT. (and make noise and move fast).
@black_lie@xanga - @alayshaj@xanga - @faded_memorii@xanga - Thanks!!! It is Very Cool!!!
@thegeopoliticalwoman@xanga - I get that. I don't do manecures either & I get nervous watching cooking shows. No Worries, I'm Very Careful ~ 13 years and no ER visits.:o)
That's wonderful. It's what my Maman would say too, if asked.
I think, for me, the difference with the cooking show, is that they use the knife on the food, and it is not alive and cannot feel. (This is different with meat, that once could feel).
With the cooking shows, they do a lot of patter to probably distract. Lots of conversation between the two people.
A lot of kids end up talking - really talking - in their teenage years. Hopefully Danny won't have depression, but it does open up the floodgates. (Sometimes). There is a really good book called Smiling at Shadows (the link will show you what Dane Waites is doing now).
WOW! I have had an experience like this and will never forget the moment. I had been working for months with a student to get him to sit and talk when there was a problem. I would get him to sit and repeat " I want to sit and talk" and we eventually we'd figure out the problem. One day he ran back into his "office" from music class, looked me in the eye and said "I want to sit and talk" and he told me what had happened in music class! HE DID IT! and so did Daniel! be ready it will happen again!
@jeannicol - It's pretty awesome! On Friday he said "12 checks" "teachers room" Of course I knew it was a school issue. They use a reward system as we do at home where he earns points to receive a desired item or activity. He wanted the computer in the teachers' lounge which I was pretty sure was off limits so I told him he would have to talk to the teacher. He got upset, started hitting and I had to put him in time out. He was perseverating on the issue so when he calmed down I gave him a pen and paper and told him to write a letter request to his teacher. With prompting we got the words out on paper and he carried the letter around with him all weekend. They were not going to accomodate but at least he could start some sort of communication and have his request acknowledged. The big problem is that he always hits when he's dissappointed with a no answer. Hitting is never rewarded in any way and we have always been very consistent on that issue but it never stops him from acting out. Testosterone is a powerful hormone. I have a punching bag, a trampoline and lots of other OT devises in my living room but he prefers to take it out on us. This is the huge problem we are faced with now as he is 5' 7" and 150 lbs. You would think that knowing it does not help his case to hurt people that he would stop but he has a quick trigger. I think we have tried it all and even the school is struggling to come up with a solution but we plug away and hope that puberty is the main cause of his aggression and that it will calm somewhat as he progresses. Today he has to earn 6 smileys to go to the zoo so wish us luck. ;0)
@thegeopoliticalwoman@xanga - Thank you for the book reference. I will check that out. He definately wants to engage more but his anxiety, ocd and aggressive behavior get in the way of him participating in peer group activity. We are diligently working on getting this all under control and hopefully he will learn that you get better results when you treat people kindly and are not aggressive. It's a long process with lots of ups and downs but I'm encouraged and hopeful for the future.
when my brother a little, he was diagnosed with autism.
And I've gotta say, they really surprise you!!
He couldn't talk for about 3 years maybe. I remember playing legos with him one day and he built them really high and said "wow." I was like did he just say what i think he said? OMGG HE SPOKE!!!! that was the first word i ever heard him say. it was amazing. later on he started saying more words. What he said didn't make sense. He couldn't answer questions or anything. then he just got better and better. now he's 15 and he's in regular classes. but the unfortunate part, is that he's failing them. he skips class and he's been suspended 3 times. He started smoking at school last year. that was like the biggest shock of my life. He's really deceptive and hard to trust now. He still can't explain things so well. and he doesn't ask questions when he needs help.
I was just wondering, is it possible to once have autism but then not have it anymore?
Because I guess for some reason I just thought he stopped having autism as soon as he started talking. but that's cause my idea of autism was wrong. i just thought it meant you couldn't talk.
so is it that someone will be autistic their whole life?
@mansei@xanga - It's hard to say, every case is so individual. I know a boy who did not talk until he was 4 and now he never stops talking. He was originally diagnosed severe autism but now he is PDD-NOS so a reevaluation would be in order if not already done. Many high functioning autistic individuals can talk it just may be harder for them to express themselves properly. There is a quick reference called the DSM1V and you can check the criteria for autism but a clinician would have to evaluate and provide a definitive diagnosis. No matter what is going on technically it sounds like your brother could use some help either way. I would hope that school professionals can work with your parents to provide and educational experience that will adapt to your brother's needs.
This sight is a nice reference for autism. http://www.autism-society.org/site/PageServer I wish you well and hope your brother can get the help he needs.
Good to know that you are encouraged and hopeful, P1.
I always said that if I wanted to understand one psychological thing for 2009, it would be OCD.
Many of my autistic friends are helping me do this so far, especially Mark Foster. I don't know if I want to single anyone else out, but one of the Melbourne experts, Bruce Tonge, did a fair few big studies on it in the context (he has been especially good to distinguish it from rituals and repetitive behaviour - which some people do not always take care to do). Also, Like Colour to the Blind, the third part of Donna Williams' autobiography, is very good. One thing I learnt was deal with the compulsions sooner rather than later because she and Ian had at least twenty years of it. And very frequently they are generational/heriditary.
I do basically understand that OCD is an anxiety disorder.
There are several good books like Go away, Mr Worrythoughts! and Happythoughts are everywhere. Those have the character Brandon/Brayden and how he deals with his worrythoughts and his happythoughts. But so very often obsession and compulsion are not in the mind, they are in the body. It is essentially the 'chicken and the egg' problem.
@thegeopoliticalwoman@xanga - Thank you for the references. I have read one of Donna Williams books. It was so long ago I would have to reference my Autism Library. ha ha The anxiety and OCD do go hand in hand. Fortunately it does not overtake his entire day, it comes in waves and I tend to back off if a ritual becomes an obsession. If he is allowed to get through the perceived necessary actions he can move on. It's only when he wants to involve one of us bystanders in his ritual. He seems to believe we all operate on the same playing field and therefore know what needs to happen. If we mess up we can pay a heavy price so we just decline the invitation to participate and let him work through it if we can not otherwise distract him. I will check out those books ~ Thank You!!