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)
Thursday, June 5, 2014
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.
Thursday, May 29, 2014
An Insightful Discovery
Today Stephen was playing a multiplication game, I closed my eyes to see if he could do it without me looking at the screen, he kept getting the answers wrong;
Whats wrong?
I can't do it when you close your eyes.
Why not?
Because I don't do it on my own like you think I do.
What do you mean?
I rely on you moving my hand back to center.
Do you look at the keyboard when typing?
No, I do it by memory.
So if I don't move your hand back to center, you can't find the letters?
No
I'm glad you explained this to me.
I am too.
So when you can't type with other people it is because they don't move your hand back to the center, they just let you move it where you want.
yes.
I'll let others know that.
Since we have started typing with Stephen he has repeatedly expressed his frustration with people not holding his hand right.
Because he doesn't know how to hold my hand right
Because she can't do it right
I don't know how to type with her
So now it makes a little more sense and I think he will be able to type with more people (with practice).
I can't help but recognize the blessing and miracle it is that I was able to know what to do, that it just worked. I think that if I had always brought his hand to any location he would have memorized from that location, so I don't think Center is necessary; just consistency.
It is also a blessing, I've been praying to know how to help others hold his hand "right" but didn't know what "right" was, so now I do!
Awesome!
Whats wrong?
I can't do it when you close your eyes.
Why not?
Because I don't do it on my own like you think I do.
What do you mean?
I rely on you moving my hand back to center.
Do you look at the keyboard when typing?
No, I do it by memory.
So if I don't move your hand back to center, you can't find the letters?
No
I'm glad you explained this to me.
I am too.
So when you can't type with other people it is because they don't move your hand back to the center, they just let you move it where you want.
yes.
I'll let others know that.
Since we have started typing with Stephen he has repeatedly expressed his frustration with people not holding his hand right.
Because he doesn't know how to hold my hand right
Because she can't do it right
I don't know how to type with her
So now it makes a little more sense and I think he will be able to type with more people (with practice).
I can't help but recognize the blessing and miracle it is that I was able to know what to do, that it just worked. I think that if I had always brought his hand to any location he would have memorized from that location, so I don't think Center is necessary; just consistency.
It is also a blessing, I've been praying to know how to help others hold his hand "right" but didn't know what "right" was, so now I do!
Awesome!
Wednesday, May 28, 2014
A Lesson on Prayer
I don't want to pray tonight.
Why not?
Because prayer is pointless
Why?
Because I got the friend I prayed for; but you get friends by being nice, not by praying for them.
That is true, you have to be nice to get friends; but you were helped to know what you needed to do, and who would be a good friend. And Heavenly Father helped him want to be your friend.
I told him about some blessings I've received from praying and how praying is mostly to thank Heavenly Father for blessings that we already have.
He bowed his head and pretended to pray... then laughed after saying he was done and said, I didn't really pray.
Stephen, I am not going to make you pray, I will teach you how and remind you to pray; and help you. I will also keep telling you how prayer blesses my life, but we aren't going to make you! But if you stop being grateful to Heavenly Father, he might not send you so many blessings.
He acted like he was praying again, and said.
I prayed in my mind.
I think he taught a good lesson on "Faith without works is dead." You can't just pray for things and not do anything yourself. If he prayed every night for a friend but never acted like a friend himself and if he was never nice he wouldn't have friends. We have to do our part too!
Why not?
Because prayer is pointless
Why?
Because I got the friend I prayed for; but you get friends by being nice, not by praying for them.
That is true, you have to be nice to get friends; but you were helped to know what you needed to do, and who would be a good friend. And Heavenly Father helped him want to be your friend.
I told him about some blessings I've received from praying and how praying is mostly to thank Heavenly Father for blessings that we already have.
He bowed his head and pretended to pray... then laughed after saying he was done and said, I didn't really pray.
Stephen, I am not going to make you pray, I will teach you how and remind you to pray; and help you. I will also keep telling you how prayer blesses my life, but we aren't going to make you! But if you stop being grateful to Heavenly Father, he might not send you so many blessings.
He acted like he was praying again, and said.
I prayed in my mind.
I think he taught a good lesson on "Faith without works is dead." You can't just pray for things and not do anything yourself. If he prayed every night for a friend but never acted like a friend himself and if he was never nice he wouldn't have friends. We have to do our part too!
Monday, May 26, 2014
A Sweet Heart and a Tease!
Wow does Stephen think he is funny!!! and he is!
Tonight at Family Night we were talking about keeping the commandments. We read from Elder Claudio D. Zivic's talk: "Let's Not Take the Wrong Way.
He said, "It would be wonderful to have a desire deep in our hearts to keep the commandments without anyone constantly reminding us and to have a confirm conviction that if we follow the right path, we will have the blessings promised in the scriptures." ( https://www.lds.org/general-conference/2014/04/lets-not-take-the-wrong-way?lang=eng )
We asked Stephen what he learned:
That we should always keep the commandments!
We talked about it for a while and he indicated he had something he wanted to say:
But I don't want to always keep the commandments because I think it is fun to make mom mad!
I said, "and I will think it is fun to spank your bottom"
We talked a little more and he wanted to say something again.
I was just kidding! I wanted to make everyone laugh!
He is such a funny guy!
He is a sweet heart too though: Tonight he prayed;
Dear Heavenly Father, Thank thee for the great day we had today I really had fun with my family today. Thank thee for the ability to communicate with them. I know I am sometimes naughty but I love my mom and dad. Thank thee for good friends too. I really like to play with them. In the name of Jesus Christ, amen.
He is such a good boy! I love him more and more everyday!
Tonight at Family Night we were talking about keeping the commandments. We read from Elder Claudio D. Zivic's talk: "Let's Not Take the Wrong Way.
He said, "It would be wonderful to have a desire deep in our hearts to keep the commandments without anyone constantly reminding us and to have a confirm conviction that if we follow the right path, we will have the blessings promised in the scriptures." ( https://www.lds.org/general-conference/2014/04/lets-not-take-the-wrong-way?lang=eng )
We asked Stephen what he learned:
That we should always keep the commandments!
We talked about it for a while and he indicated he had something he wanted to say:
But I don't want to always keep the commandments because I think it is fun to make mom mad!
I said, "and I will think it is fun to spank your bottom"
We talked a little more and he wanted to say something again.
I was just kidding! I wanted to make everyone laugh!
He is such a funny guy!
He is a sweet heart too though: Tonight he prayed;
Dear Heavenly Father, Thank thee for the great day we had today I really had fun with my family today. Thank thee for the ability to communicate with them. I know I am sometimes naughty but I love my mom and dad. Thank thee for good friends too. I really like to play with them. In the name of Jesus Christ, amen.
He is such a good boy! I love him more and more everyday!
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