This week Stephen has started typing 1 letter of a word and pressing "speak" he seems to think it is too much to have to write the whole word himself. We have also been trying to to work on the next step to independent. We would point to a letter on the keyboard and have him type different sentences (typing practice). He did great at first and then we started trying to just say the letter and have him do 1 letter on his own. he would look at me with a mischievous smile and would hit the key next to it, or hold the key down for multiple pages.
We asked him why it is hard to type by himself and he said, "I could if I tried."
I bought lots of treats, ice cream donuts, cookies, fruitsnacks---to try to motivate him with food, he said, "I don't want to ear treats, I should just get them because I have Autsim."
Nothing seemed to work, the more we would try to encourage the harder he would push back to not type, it needs to be his own idea and he needs to have the desire to do it himself!
We talked with some other parents who have been in similar situations and they said, it wasn't until we told him he wouldn't get anything unless he asked for it that he decided it was worth it, if you continue to help him do it he will never have any reason to do it himself.
So we are going to go through that battle, it hurts so bad to not just help him; but I know he is capable to do it and that motivation is what is keeping him from doing it! I hope he decides quickly that it is worth it! I know that if we don't do it now we will have to do it down the road, so we can either do it today or wait 5 years; but he is going to have to go through it, and climb his mountain.
We would appreciate prayers that Stephen will decide he wants to communicate and understand that it would be a blessing for him!
It is so frustrating to me, he has been given one of the greatest gifts that I'm sure most autistic kids would love to have, he often says "I don't care" when I try to explain how blessed he is to have this opportunity. It is so hard to watch him waste this opportunity!
Pray for me to, that I can be patient in him going through this learning experience!
Thursday, June 12, 2014
Monday, June 9, 2014
Communicating Step 1
We are currently working on him becoming more independent in typing...I'm not sure if it is a lack of motivation or just unlearned body movement keeping him from doing it himself. Right now we practice a couple times a day on a key board, we point to where the letter is and say the letter name--the thought is that once he has had enough practice his body will memorize the movement for each letter and he will be able to type without assistance.
We hope it works!
Friday, June 6, 2014
"Listening"
I remember other people always telling me that I had a lot of patience, and I would scoff and say; you have no idea how impatient I am... the last few weeks I've realized that I do have patience, and how necessary it is for Stephen to communicate like he would like to.
Often times Stephen will be asked a questions and he'll start typing the answer; before he can even finishes I will hear, "Ok, I know what you want, lets go." I think it is really important to wait until he decides he is done before assuming that he is done. ---It is just like interrupting another person while talking, assuming you know what they are going to say.
Another thing that sometimes happens is Stephen will begin typing a sentence and someone will say, oh ..... and finish if for him and so sometimes he says what they think instead of what he himself thinks.
One more thing that has happened, is Stephen will start typing and whomever he is talking to will get bored and start talking to someone else.
As I review these scenarios I realize they are very typical of communication in General. Waiting for Stephen to type all he wants to say and waiting for someone to finish saying what they wanted to say is an important listening skill we should all work to develop.
I remember when I first started typing with Stephen that I would lead his hand to the speak button when I thought he was or should be finished, I decided to wait and have him initiate it and realized, he was capable of and wanted to say more than one sentence when talking; sometimes I sit there for 5 min just having him type, not saying a word (although I am often tempted). but just "listening."
Often times Stephen will be asked a questions and he'll start typing the answer; before he can even finishes I will hear, "Ok, I know what you want, lets go." I think it is really important to wait until he decides he is done before assuming that he is done. ---It is just like interrupting another person while talking, assuming you know what they are going to say.
Another thing that sometimes happens is Stephen will begin typing a sentence and someone will say, oh ..... and finish if for him and so sometimes he says what they think instead of what he himself thinks.
One more thing that has happened, is Stephen will start typing and whomever he is talking to will get bored and start talking to someone else.
As I review these scenarios I realize they are very typical of communication in General. Waiting for Stephen to type all he wants to say and waiting for someone to finish saying what they wanted to say is an important listening skill we should all work to develop.
I remember when I first started typing with Stephen that I would lead his hand to the speak button when I thought he was or should be finished, I decided to wait and have him initiate it and realized, he was capable of and wanted to say more than one sentence when talking; sometimes I sit there for 5 min just having him type, not saying a word (although I am often tempted). but just "listening."
Thursday, June 5, 2014
Stephen's 1st Free Write
The school sent home some activity packets to work on this summer, so I pulled out the 1st grade activity pack and told Stephen we would do 2 pages.
On the first page it said "Free Choice Writing" I told him to write at least 3 sentences.
This is what he wrote:
I don't like school because I think too much of it is for babies. I would like it more if it was new things. I just have a hard time doing the same thing repeatedly.
Hope we can make school more interesting for him, the first month will probably be boring because I'm just going to go over stuff to make sure he knows it, after that though we should have some fun! (I hope)
On the first page it said "Free Choice Writing" I told him to write at least 3 sentences.
This is what he wrote:
I don't like school because I think too much of it is for babies. I would like it more if it was new things. I just have a hard time doing the same thing repeatedly.
Hope we can make school more interesting for him, the first month will probably be boring because I'm just going to go over stuff to make sure he knows it, after that though we should have some fun! (I hope)
the Importance of Understanding the relationship of Apraxia and Autism
This was the report from Stephen's Speech Therapist:
Stephen follows speech routines and works at a small table for therapy tasks. Stephen's attention to task in the communication therapy setting has improved. He is generally a happy participant in these activities. Stephen is consistently making two-hit combinations "I want" +item to obtain a highly preferred edible reinforcer and is beginning to make three hit combinations I +want+time with a one to one model. Lack of awareness and/or interest continues to impact Stephen's potential for oral/verbal communication. He does not yet relate his own actions in making sounds to communicative functionality. Stephen has frequent, daily opportunities to interact using multiple options for assistive technology....As of this date, he shows interest in these opportunities only for highly preferred tangible rewards. These opportunities and interaction will continue to be encouraged.
The OT Report:
Making progress. Have a great Summer!
Teacher's Report
We have enjoyed having Stephen in our classroom. I look forward to seeing the progress he makes next year!
The thing that frustrated me the most is that she said that a lack of awareness or interest is what is preventing Stephen from oral communication --- I have no idea if Stephen will or will not speak verbally, but it isn't because he doesn't want to it is because he CAN'T... he tells his mouth what to do and it doesn't respond, it just won't make the words he wants it to...that is called apraxia... he hasn't been "diagnosed" with apraxia, but it is clear that is what is going on, I wouldn't have known it if his Speech Therapist outside of school hadn't suggested it. But I would think a Speech Therapist would know about it.
It is interesting how much of a lack of understanding there is about apraxia and autism, and how they go together. Almost every kid with autism's blog I have read writes about this disconnect from mind to body, I've heard it from both ends of the spectrum. Although they want to do one thing, their body does something else. However, I don't think there is a diagnosis for physical apraxia (as Ido calls it).
Stephen has explained this to us a few times, I am learning that what we are teaching Stephen is how to do something new, or how to control his body...he says he has to do something enough times before he can do it independently. It is body training not mind training. It is hard to get professionals/teachers to understand that though, I guess I may just need a better way to explain it to them! (Maybe I'll ask Stephen).
I hope that with more and more kids finding a way to communicate researchers will look into the mind/body disconnect and see a pattern there! I think kids with autism would be better understood and would be a lot less frustrated if teachers/therapists explained; "I know you know the difference between X and Y, this is a body control activity so you can practice making the right choice." I've noticed a decrease in frustration when I explain that to Stephen!
Stephen follows speech routines and works at a small table for therapy tasks. Stephen's attention to task in the communication therapy setting has improved. He is generally a happy participant in these activities. Stephen is consistently making two-hit combinations "I want" +item to obtain a highly preferred edible reinforcer and is beginning to make three hit combinations I +want+time with a one to one model. Lack of awareness and/or interest continues to impact Stephen's potential for oral/verbal communication. He does not yet relate his own actions in making sounds to communicative functionality. Stephen has frequent, daily opportunities to interact using multiple options for assistive technology....As of this date, he shows interest in these opportunities only for highly preferred tangible rewards. These opportunities and interaction will continue to be encouraged.
The OT Report:
Making progress. Have a great Summer!
Teacher's Report
We have enjoyed having Stephen in our classroom. I look forward to seeing the progress he makes next year!
The thing that frustrated me the most is that she said that a lack of awareness or interest is what is preventing Stephen from oral communication --- I have no idea if Stephen will or will not speak verbally, but it isn't because he doesn't want to it is because he CAN'T... he tells his mouth what to do and it doesn't respond, it just won't make the words he wants it to...that is called apraxia... he hasn't been "diagnosed" with apraxia, but it is clear that is what is going on, I wouldn't have known it if his Speech Therapist outside of school hadn't suggested it. But I would think a Speech Therapist would know about it.
It is interesting how much of a lack of understanding there is about apraxia and autism, and how they go together. Almost every kid with autism's blog I have read writes about this disconnect from mind to body, I've heard it from both ends of the spectrum. Although they want to do one thing, their body does something else. However, I don't think there is a diagnosis for physical apraxia (as Ido calls it).
Stephen has explained this to us a few times, I am learning that what we are teaching Stephen is how to do something new, or how to control his body...he says he has to do something enough times before he can do it independently. It is body training not mind training. It is hard to get professionals/teachers to understand that though, I guess I may just need a better way to explain it to them! (Maybe I'll ask Stephen).
I hope that with more and more kids finding a way to communicate researchers will look into the mind/body disconnect and see a pattern there! I think kids with autism would be better understood and would be a lot less frustrated if teachers/therapists explained; "I know you know the difference between X and Y, this is a body control activity so you can practice making the right choice." I've noticed a decrease in frustration when I explain that to Stephen!
Tuesday, June 3, 2014
Feeling Grateful!
The last few days I have been a little frustrated that Stephen needs help to type; manly because it looks like we are typing for him and a lot of people assume that is what is happening until they take time to look and read what he is writing, that or type with him and feel his hand move independently typing their own words.
So I've been thinking what can I do to get him to independence, (and I think it is good to look forward to that). This morning I watched a video called
"Ethan's Story-Breaking through the autism glass ceiling"
https://www.youtube.com/watch?v=evjbx9_RiMY&feature=share
There is also the video of Carly
https://www.youtube.com/watch?v=34xoYwLNpvw
And Ido
https://www.youtube.com/watch?v=oNlLez0bGbc
And these kids
https://www.youtube.com/watch?v=2FlIyJJRc0E
I see these all these examples of people typing independently, and wonder why does Stephen need someone to hold his hand to help him...
And then I realized Stephen is 7 years old, these kids are now teenagers or older... Stephen can type complete sentences, thoughts and really express himself completely, at age 7! In the next 4-5 years when he is 11 like Carly was when she started typing independently (which was still a struggle for a few years till she was proficient) and Ido who was 12 when he started his published writings, Stephen will very likely be independent too!
I am so grateful that Stephen is able to communicate! I am grateful we didn't have to wait another 4 years to figure that out! Even if he doesn't ever completely become independent I now know my son!
We have an exciting road a head, and hopefully like these kids have; Stephen will be able to help inspire mothers and fathers, teachers and professionals to think more about the capabilities of their child/student who seems lost, unresponsive and unable to learn.
We have been blessed!
So I've been thinking what can I do to get him to independence, (and I think it is good to look forward to that). This morning I watched a video called
"Ethan's Story-Breaking through the autism glass ceiling"
https://www.youtube.com/watch?v=evjbx9_RiMY&feature=share
There is also the video of Carly
https://www.youtube.com/watch?v=34xoYwLNpvw
And Ido
https://www.youtube.com/watch?v=oNlLez0bGbc
And these kids
https://www.youtube.com/watch?v=2FlIyJJRc0E
I see these all these examples of people typing independently, and wonder why does Stephen need someone to hold his hand to help him...
And then I realized Stephen is 7 years old, these kids are now teenagers or older... Stephen can type complete sentences, thoughts and really express himself completely, at age 7! In the next 4-5 years when he is 11 like Carly was when she started typing independently (which was still a struggle for a few years till she was proficient) and Ido who was 12 when he started his published writings, Stephen will very likely be independent too!
I am so grateful that Stephen is able to communicate! I am grateful we didn't have to wait another 4 years to figure that out! Even if he doesn't ever completely become independent I now know my son!
We have an exciting road a head, and hopefully like these kids have; Stephen will be able to help inspire mothers and fathers, teachers and professionals to think more about the capabilities of their child/student who seems lost, unresponsive and unable to learn.
We have been blessed!
My Dumb Body--by Stephen
My body doesn't respond the way it is suppose to, I have to already have done something before in order to do it on my own. I need to be assisted in everything enough times for my body to respond on its own. For example, yesterday my mom told me to go get the I Pad from the table. I tried but my body would not respond. I got my backpack I knew it wasn't in my backpack but my body was accustomed to going to my backpack for my I pad. It makes me mad that I can't control my actions, I don't like doing wrong things, it makes me look stupid. I wish I could be like everyone else and just do what I want to do. I know that someday I will be able too, but I don't want to wait. I know I will love having the ability to talk too, then I won't need anyone helping me when I want to say something, I can just say it and they will know it is my own idea, but now they think my mom is just having my type what she wants me to say.
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