I've been learning a lot about trials or why life is sometimes so hard! Not because of the trials I am going through, But because of the difficulties and struggles I require Stephen to go through! Last week it took him 9 hours to do something, after 9 hours of struggling he did it and felt pretty proud...the next day I had him practice 5 times in a row, he did it 5 times in 2 minutes. He has now successfully done it himself everyday since. I could have just given up that day and continued to do it for him, but now he is so much more independent then he was before.
I think a lot of our trials or difficulties are like that, could God intervene and just carry the burden or solve the problem for us? Of Course!!! But how would we grow? What is really in our best interest?
Requiring Stephen to grow has helped me understand why when I pray things don't just go away or get easier. Heavenly Father loves us so much that He lets us struggle, so we can grow.
It is so hard sometimes to watch Stephen struggle and fight doing what I know he is capable of doing, Sometimes it seems he puts more effort in to not doing what I ask than would be required to do the task. When I think about my life I wonder in how many ways I do that to, do I work harder to avoid difficulties or frustrating situations than I would have to do if I just faced them head on and pushed through?
Looking back at where Stephen has come in the last 2 years it is truly amazing. He has made so much progress and has learned to do so many things, each new skill has been such a battle and at times I have wondered if it was really worth it to "make" him do it himself. I love him so much that although it is hard to watch him struggle I want more than anything for him to be successful!
I think Heavenly Father feels the same way about us!
Some links:
Be for your good
Trials help us grow
Finding Joy in Life
Tuesday, September 9, 2014
Monday, August 11, 2014
A New Begining
It has been so hard to not have Stephen typing all his thoughts and what he is thinking/feeling. I've been thinking a lot and every couple of weeks we would try to encourage him to type "eat" or "treat" or something, and just hadn't seen any progress. Last week he was able to type "treat" with a lot of prompting from me, "Touch the T"--and deleting the wrong letter, "close, touch the T" The next day he wouldn't even try.
This morning I came upon this entry from a boy who types to communicate: it really gave me some hope.
Typing is not my idea of fun. No one believes that controlling my hand to do what I want can be so much work. Getting my fingers to choose the right letters is very hard. So much concentration is going into keeping myself really from making mistake after mistake. In the beginning it was much more difficult but because I have practiced so much it is getting easier. So now I can type on my own. Lots of time I still don't want to type but my mom knows that I can get better at typing so she keeps pushing me not to give up. One day I believe that typing will be as easy as riding my bike. I remember when my legs and feet could not move the pedals on my bike. Now I can do it easily.
Oliver
Understanding how much work it actually is for Stephen to control his body to actually type a word helps me be more patient working with him, it has also helped me to find ways to encourage him, reminding him of the things that use to be so hard for him, (like getting dressed, feeding himself, loading the dishwasher, buttoning his shirt, putting on his socks and shoes, playing games on the Ipad ect.) he can do all these things without really thinking now! Eventually typing will be the same way for him.
So today I would ask him a question after reading from a book, a simple one word question and then let him try to answer it himself, if he wasn't able to after 3 tries I would help him by telling him the letter to type---I found that if I pointed to the left or right of the keyboard he was able to find the right letter quicker---still with a lot of difficulty.
I was able to stay encouraging and let him know that I was proud of him even though it was so hard.
It was also easy to tell when he had "given up" and just started pushing randomly until he accidentally got the right letter. (He only did that on one word). We just took a break and came back to the same word.
I think E is almost an automatic letter already, he rarely misses the letter E and doesn't need me to point to what side of the keyboard it is on!!!
There is hope, and I'm pretty excited about that!
***I think this blog is turning into more about me and my progress rather than Stephen's!
This morning I came upon this entry from a boy who types to communicate: it really gave me some hope.
Typing is not my idea of fun. No one believes that controlling my hand to do what I want can be so much work. Getting my fingers to choose the right letters is very hard. So much concentration is going into keeping myself really from making mistake after mistake. In the beginning it was much more difficult but because I have practiced so much it is getting easier. So now I can type on my own. Lots of time I still don't want to type but my mom knows that I can get better at typing so she keeps pushing me not to give up. One day I believe that typing will be as easy as riding my bike. I remember when my legs and feet could not move the pedals on my bike. Now I can do it easily.
Oliver
Understanding how much work it actually is for Stephen to control his body to actually type a word helps me be more patient working with him, it has also helped me to find ways to encourage him, reminding him of the things that use to be so hard for him, (like getting dressed, feeding himself, loading the dishwasher, buttoning his shirt, putting on his socks and shoes, playing games on the Ipad ect.) he can do all these things without really thinking now! Eventually typing will be the same way for him.
So today I would ask him a question after reading from a book, a simple one word question and then let him try to answer it himself, if he wasn't able to after 3 tries I would help him by telling him the letter to type---I found that if I pointed to the left or right of the keyboard he was able to find the right letter quicker---still with a lot of difficulty.
I was able to stay encouraging and let him know that I was proud of him even though it was so hard.
It was also easy to tell when he had "given up" and just started pushing randomly until he accidentally got the right letter. (He only did that on one word). We just took a break and came back to the same word.
I think E is almost an automatic letter already, he rarely misses the letter E and doesn't need me to point to what side of the keyboard it is on!!!
There is hope, and I'm pretty excited about that!
***I think this blog is turning into more about me and my progress rather than Stephen's!
Thursday, June 12, 2014
A Hard Decision
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!
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!
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.
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!
Saturday, May 24, 2014
Reading---well pretending to anyway!
We went to the library to check out some books, I had him pick one to read and started reading to him. He pounded his hands together--indicating he wanted to type.
He said:
I don't want to listen to you read. I want to read it myself.
How will you turn the pages?
I will clap my hands when I am done.
ok
He never did clap his hands just reach for the pages.
After about 4 seconds a page he was ready to turn the page, so I did and at the end of the chapter I asked him what happened.
They were going to school and they heard the bell of the jewelry store go off. Then they went to see what happened. They found someone stole the gold coins from the bank. so they went to see who it was. That is confusing because they heard the alarm n the jewelry store.
Who ever said kids with Autism don't have a good memory is kidding! That isn't at all what happened; he didn't want to read so he made the whole thing up!
Now I know he can write stories though!
Oh what a funny boy!
He said:
I don't want to listen to you read. I want to read it myself.
How will you turn the pages?
I will clap my hands when I am done.
ok
He never did clap his hands just reach for the pages.
After about 4 seconds a page he was ready to turn the page, so I did and at the end of the chapter I asked him what happened.
They were going to school and they heard the bell of the jewelry store go off. Then they went to see what happened. They found someone stole the gold coins from the bank. so they went to see who it was. That is confusing because they heard the alarm n the jewelry store.
Who ever said kids with Autism don't have a good memory is kidding! That isn't at all what happened; he didn't want to read so he made the whole thing up!
Now I know he can write stories though!
Oh what a funny boy!
Friends
Last night at a dance recital for kids in our ward Stephen said to me:
I want a friend
You have a friend
He isn't my friend he doesn't understand what I am thinking
He is nice to me, but not my friend.
I decided we need to have a lesson on what a friend is, because this little boy I was talking about is the best friend a kid could ever hope to get. Matthew and I talked about friendship last night after the kids had gone to bed; we talked about how when Stephen goes to his friends houses they try to play with him and he just wants to spin his favorite toys, and that Stephen really isn't a good friend to all the kids who try to play with him.
This morning we listened to "Count on Me" by Bruno Mars. Then read a couple of stories about friends.
Then we talked about what makes a good friend, who Stephen's friends are, and how he could be a better friend.
I did ask him if he heard us talking last night and he said Yes.
After we were done he was standing up and I said where are you going?
To the baptism
Why?
Because I want to get a friend.
(earlier he was complaining about going to the girls baptism because it was at the church and he would have to sit still). :)
I want a friend
You have a friend
He isn't my friend he doesn't understand what I am thinking
He is nice to me, but not my friend.
I decided we need to have a lesson on what a friend is, because this little boy I was talking about is the best friend a kid could ever hope to get. Matthew and I talked about friendship last night after the kids had gone to bed; we talked about how when Stephen goes to his friends houses they try to play with him and he just wants to spin his favorite toys, and that Stephen really isn't a good friend to all the kids who try to play with him.
This morning we listened to "Count on Me" by Bruno Mars. Then read a couple of stories about friends.
Then we talked about what makes a good friend, who Stephen's friends are, and how he could be a better friend.
I did ask him if he heard us talking last night and he said Yes.
After we were done he was standing up and I said where are you going?
To the baptism
Why?
Because I want to get a friend.
(earlier he was complaining about going to the girls baptism because it was at the church and he would have to sit still). :)
Friday, May 23, 2014
The Truth Hurts
This morning breakfast conversation:
When will the toast be done?
In a few minutes.
Do you like to wait?
No
What word means to wait without getting upset?
Patient
(Peter turned off the light, and Stephen started getting agitated).
Why are you upset?
Because Peter turned the light off.
Why don't you like the light off?
Because it is dark.
A few minutes later:
Why are you upset?
Because I was scared Peter would turn the light off again.
Why did you keep crying after dad was holding Peter and he couldn't touch the light.
Because Peter is loud.
Edgy
What does Edgy mean?
I get nervous
Why are you upset now?
Because you are too annoying.
Later- He kept trying to stim.
What are you doing?
Spinning
Why are you spinning?
Because you keep talking
How does the spinning help you?
It helps me not to hear you.
So I just hugged and tickled him instead....I guess being interrogate all day can be annoying! Guess I better work on that patient part of life too!
When will the toast be done?
In a few minutes.
Do you like to wait?
No
What word means to wait without getting upset?
Patient
(Peter turned off the light, and Stephen started getting agitated).
Why are you upset?
Because Peter turned the light off.
Why don't you like the light off?
Because it is dark.
A few minutes later:
Why are you upset?
Because I was scared Peter would turn the light off again.
Why did you keep crying after dad was holding Peter and he couldn't touch the light.
Because Peter is loud.
Edgy
What does Edgy mean?
I get nervous
Why are you upset now?
Because you are too annoying.
Later- He kept trying to stim.
What are you doing?
Spinning
Why are you spinning?
Because you keep talking
How does the spinning help you?
It helps me not to hear you.
So I just hugged and tickled him instead....I guess being interrogate all day can be annoying! Guess I better work on that patient part of life too!
Thursday, May 22, 2014
Stephen's first prayer
Dear Heavenly Father, thank thee for my dad and mom. Thank thee for the gift of talking. Help me be better at trying to learn. In the name of Jesus Christ, Amen.
I am so humbled so have such an amazing boy! He is so precious to me; I've been crying with joy all week! This boy is going to bless our lives in ways we can't even imagine!
Getting to know you
What is your favorite color?
Green
Why do you keep putting your head on the ground?
Because I am excited.
Why are you excited?
Because I am happy.
Will you tell Meagan what you want?
No
Why not?
Because I am shy.
What time is it?
Time to eat.
What do you like to eat?
Food
What kind of food, what is your favorite food?
Good Food
Why do you keep hugging me? What do you want to say?
I am happy.
Why are you happy?
Because I can talk.
At dinner time:
What do you want?
I want more
do you want more potatoes? meat? beans? or more potatoes, meat and beans?
I want more food!
(Stephen started laughing)
Why are you laughing?
Because I am funny!
Stephen likes: to play soccer, watch movies, play with the ball, hold Mable.
Stephen does not like: running or reading.
Green
Why do you keep putting your head on the ground?
Because I am excited.
Why are you excited?
Because I am happy.
Will you tell Meagan what you want?
No
Why not?
Because I am shy.
What time is it?
Time to eat.
What do you like to eat?
Food
What kind of food, what is your favorite food?
Good Food
Why do you keep hugging me? What do you want to say?
I am happy.
Why are you happy?
Because I can talk.
At dinner time:
What do you want?
I want more
do you want more potatoes? meat? beans? or more potatoes, meat and beans?
I want more food!
(Stephen started laughing)
Why are you laughing?
Because I am funny!
Stephen likes: to play soccer, watch movies, play with the ball, hold Mable.
Stephen does not like: running or reading.
HE CAN READ!!!
Trial and Error
#1 - Reading Ido's book he mentioned that he was able to write and point to letters with his mom's help, but the therapists thought she was somehow manipulating his hand and that he wasn't really doing his own work. He went to a therapist named Soma who had taught her son Timo to communicate independently with a letter board. She was able to teach him to communicate without relying on hand support from his mother (her method is called Rapid Prompt Method or RPM).
I would like Stephen to be able to answer questions independently so I looked on her website and tried to figure out her strategies to implement them with Stephen. The first phase is learning to choose correctly; she would write out a question, tear a paper and have the student point to the answer. Parents were amazed at how their students can answer questions!
Here is a link to the videos of Soma doing her work:
http://www.halo-soma.org/learning_videos.php?sess_id=a49790e6ac9ff20788007cd34c274082
When he got home from school Tuesday I decided to try this way again (I had tried it Monday morning and got frustrated because he wasn't getting them right, but when I helped him spell the answers he would).
So I tried again, and boy was that a mistake; Stephen was mad and angry the whole time, I burst into tears wondering why he can't do it (although I know it is the apraxia). It was a miserable experience and I decided;
I don't care if Stephen needs me to support his hand for the next few months-few years! When we are both ready to move to learning independence we will take that step; but for now we are just going to do what works!
#2 - Stephen gets frustrated when he doesn't know how to answer the question or express what he wants to say!
Tonight at dinner we had Fish, Potatoes and Salad. I asked Stephen what he wanted and he said;
I want hnicheienjgue
That doesn't make sense, try again:
hhfghfjfndj
If you can't tell me what you want you must be done; why don't you go get ready for bed...
Boy was he mad! But I didn't know what to do, he wasn't thinking/or doing it right? What is wrong? Why can't he type potatoes---he did last time (potatoes is what he pointed at).
After a few minutes I asked him if he wanted to come back and try again; and had the thought--- he wants more of everything but doesn't know that he can ask for more than one thing; so he is frustrated!
I typed on the I-Pad; I want potatoes, fish, and Salad. And explained that he could type everything he wanted and to just use a comma in between words.
I want fish, potatoes, salad
Lesson Learned: Stephen needs to be taught how to express his thoughts/ if he doesn't seem to by trying it is because he is confused at how to say something, or doesn't know how to write/spell the words he wants to use.
The other thing we have discovered that works is if Stephen doesn't type an answer, the next thing to try is to guess... by asking yes or no questions: Do you want X? Do you need Y? While this may not hit on the exact thing he wants to say, it will get him something he does want or need and we can keep going from there!
The more reading we do the more he'll know how to say and spell! (It is only day 4)!
I would like Stephen to be able to answer questions independently so I looked on her website and tried to figure out her strategies to implement them with Stephen. The first phase is learning to choose correctly; she would write out a question, tear a paper and have the student point to the answer. Parents were amazed at how their students can answer questions!
Here is a link to the videos of Soma doing her work:
http://www.halo-soma.org/learning_videos.php?sess_id=a49790e6ac9ff20788007cd34c274082
When he got home from school Tuesday I decided to try this way again (I had tried it Monday morning and got frustrated because he wasn't getting them right, but when I helped him spell the answers he would).
So I tried again, and boy was that a mistake; Stephen was mad and angry the whole time, I burst into tears wondering why he can't do it (although I know it is the apraxia). It was a miserable experience and I decided;
I don't care if Stephen needs me to support his hand for the next few months-few years! When we are both ready to move to learning independence we will take that step; but for now we are just going to do what works!
#2 - Stephen gets frustrated when he doesn't know how to answer the question or express what he wants to say!
Tonight at dinner we had Fish, Potatoes and Salad. I asked Stephen what he wanted and he said;
I want hnicheienjgue
That doesn't make sense, try again:
hhfghfjfndj
If you can't tell me what you want you must be done; why don't you go get ready for bed...
Boy was he mad! But I didn't know what to do, he wasn't thinking/or doing it right? What is wrong? Why can't he type potatoes---he did last time (potatoes is what he pointed at).
After a few minutes I asked him if he wanted to come back and try again; and had the thought--- he wants more of everything but doesn't know that he can ask for more than one thing; so he is frustrated!
I typed on the I-Pad; I want potatoes, fish, and Salad. And explained that he could type everything he wanted and to just use a comma in between words.
I want fish, potatoes, salad
Lesson Learned: Stephen needs to be taught how to express his thoughts/ if he doesn't seem to by trying it is because he is confused at how to say something, or doesn't know how to write/spell the words he wants to use.
The other thing we have discovered that works is if Stephen doesn't type an answer, the next thing to try is to guess... by asking yes or no questions: Do you want X? Do you need Y? While this may not hit on the exact thing he wants to say, it will get him something he does want or need and we can keep going from there!
The more reading we do the more he'll know how to say and spell! (It is only day 4)!
1st whole sentence!
After school and therapy his friend Ty from church and there family were going to come over and play.
This is an interesting and important lesson to understand when thinking of autism!!!
There were 10 people in the living room and it was noisy and LOUD!!!
Everyone was asking Stephen questions at once;
What is my name?
Hannah
What is my name?
Ty
Stephen got really frustrated and agitated! (As an autism teacher/expert you might think: Oh he is over stimulated and needs a break.)
I said Stephen what do you want?
He grabbed my hand and said:
I want to go with Hannah
Wow! He wasn't over stimulated, he just wanted to go to his friends house and play instead of being at our house with them! They jumped in her car and went to her house.
They wanted to see if he would communicate with them too; so Hannah supported his hand and the boys asked him questions;
What do you want to eat?
coky cookie
Why do you spin?
fun
do you want to play with the ball?
no
I am so proud of him and grateful to have this door unlocked! I'm especially glad that he communicates with more than just me!
This is an interesting and important lesson to understand when thinking of autism!!!
There were 10 people in the living room and it was noisy and LOUD!!!
Everyone was asking Stephen questions at once;
What is my name?
Hannah
What is my name?
Ty
Stephen got really frustrated and agitated! (As an autism teacher/expert you might think: Oh he is over stimulated and needs a break.)
I said Stephen what do you want?
He grabbed my hand and said:
I want to go with Hannah
Wow! He wasn't over stimulated, he just wanted to go to his friends house and play instead of being at our house with them! They jumped in her car and went to her house.
They wanted to see if he would communicate with them too; so Hannah supported his hand and the boys asked him questions;
What do you want to eat?
coky cookie
Why do you spin?
fun
do you want to play with the ball?
no
I am so proud of him and grateful to have this door unlocked! I'm especially glad that he communicates with more than just me!
Discoveries
Wednesday May 21st
Today was a fun day in learning what Stephen knows and is capable of! I got a book in the mail, "Everything your Kindergartner needs to know" I believe he is higher than Kindergarten level, but there is know knowing for sure...
We read some Aesop's Fables; The boy who cried Wolf, and The Fox and the grapes. I asked him so questions while reading them and then at the end of both I quizzed him on what we read:
Who's Fables did the book say these stories were?
Aesop
What did they say we would find at the end of each story?
moral
How many farmers were in the 1st story?
3
What did the boy cry?
wolf
What animal was in the 2nd story?
fox
What fruit was the fox trying to get?
grapes
I am amazed that he was able to remember everything; it is so clear that Stephen knows a lot more than we think he does!
Stephen, do you like school?
no
What is your teacher's name?
Melanie (needed some help finishing her name)
What is her last name?
Bloomer
What do you like to do at school?
lunch
Who takes you to lunch?
Griffin (actually she is his speech teacher, so I guessed I helped him finish her name wrong)
Who takes you home on the bus?
Paul
Are you going to do your puzzles today when your teacher asks you to?
no
Are you going to be nice?
no
Are you going to throw a fit?
yes
We had a discussion about being nice and respectful to teachers after that comment!
He seemed to have a really frustrating and rough day at school but can't seem to tell me why or what wrong. He had a lot of tears and hugs today!
Today was a fun day in learning what Stephen knows and is capable of! I got a book in the mail, "Everything your Kindergartner needs to know" I believe he is higher than Kindergarten level, but there is know knowing for sure...
We read some Aesop's Fables; The boy who cried Wolf, and The Fox and the grapes. I asked him so questions while reading them and then at the end of both I quizzed him on what we read:
Who's Fables did the book say these stories were?
Aesop
What did they say we would find at the end of each story?
moral
How many farmers were in the 1st story?
3
What did the boy cry?
wolf
What animal was in the 2nd story?
fox
What fruit was the fox trying to get?
grapes
I am amazed that he was able to remember everything; it is so clear that Stephen knows a lot more than we think he does!
Stephen, do you like school?
no
What is your teacher's name?
Melanie (needed some help finishing her name)
What is her last name?
Bloomer
What do you like to do at school?
lunch
Who takes you to lunch?
Griffin (actually she is his speech teacher, so I guessed I helped him finish her name wrong)
Who takes you home on the bus?
Paul
Are you going to do your puzzles today when your teacher asks you to?
no
Are you going to be nice?
no
Are you going to throw a fit?
yes
We had a discussion about being nice and respectful to teachers after that comment!
He seemed to have a really frustrating and rough day at school but can't seem to tell me why or what wrong. He had a lot of tears and hugs today!
Dinner Conversation
Wednesday May 21st:
Poor Stephen has to work so much harder now, we made him ask for everything he wanted today. He was really good at typing more at dinner time! He seems so happy communicating it is so awesome!
Tonight we had our first dinner conversation. I'm crying just thinking about it; we can now ask Stephen questions and not just answer them in our heads to what we think his answer might be...if he even could understand us.... but now we know that he does understand us and that he can answer us with what he thinks! It is awesome!
Awesome, but a bit revealing as well:
Here is our 1st dinner conversation---
Did you have fun at school today?
No (I was surprised, I really thought he liked school!)
Do you like school?
No
Do you have any friends at school
(tears almost coming down his face) No
Do you have friends at Church?
Yes
Who are your friends at Church?
Ty
How was dinner tonight?
Good
Quite simple conversation, but nice to know how Stephen is thinking, and what he likes and doesn't like...there are so many questions to ask!!!
Poor Stephen has to work so much harder now, we made him ask for everything he wanted today. He was really good at typing more at dinner time! He seems so happy communicating it is so awesome!
Tonight we had our first dinner conversation. I'm crying just thinking about it; we can now ask Stephen questions and not just answer them in our heads to what we think his answer might be...if he even could understand us.... but now we know that he does understand us and that he can answer us with what he thinks! It is awesome!
Awesome, but a bit revealing as well:
Here is our 1st dinner conversation---
Did you have fun at school today?
No (I was surprised, I really thought he liked school!)
Do you like school?
No
Do you have any friends at school
(tears almost coming down his face) No
Do you have friends at Church?
Yes
Who are your friends at Church?
Ty
How was dinner tonight?
Good
Quite simple conversation, but nice to know how Stephen is thinking, and what he likes and doesn't like...there are so many questions to ask!!!
Starting Our Journey
Monday May 19th
Yesterday Matthew did a lot of typing with Stephen, Matthew would type a sentence and then takes Stephen's hand and have him say something; they did this a lot Sunday. Stephen would grab the I-Pad and take it to Matthew. I think he was trying to say he wanted more, and that he liked it.
Today Stephen cried when Matthew went to work. I told him to stop crying that Daddy wasn't the only one who knew he was smart and that he could type but that I did too. He smiled and gave me a hug. I am so excited to see where this is going to go and how quickly Stephen will be able to communicate his thoughts to us. At the same time it is a little scary because we don't know what we are going to find out.
After school we read a Clifford book, I asked him simple questions after each page:
Is Clifford a d-o-g dog or a c-a-t cat
dog
I was holding Stephens hand, but he was moving his finger to the right letters, it is unmistakable the feeling that Stephen can actually spell and answer questions! I'm so glad Ido explained the need for some people to have the physical touch in order to be successful!
We finished the book, and found that Stephen knows his colors, can correctly answer yes and no questions and that he enjoys it. He was smiling the whole time! It is so exciting.
I asked Stephen what color Peter's shirt is and he typed yes not sure if he just wasn't listening or struggles with open ended questions. When I asked if it was r-e-d red or b-l-u-e blue he correctly typed red. I guess we'll just keep going, it is only the 1st day of him typing his answer.
Yesterday Matthew did a lot of typing with Stephen, Matthew would type a sentence and then takes Stephen's hand and have him say something; they did this a lot Sunday. Stephen would grab the I-Pad and take it to Matthew. I think he was trying to say he wanted more, and that he liked it.
Today Stephen cried when Matthew went to work. I told him to stop crying that Daddy wasn't the only one who knew he was smart and that he could type but that I did too. He smiled and gave me a hug. I am so excited to see where this is going to go and how quickly Stephen will be able to communicate his thoughts to us. At the same time it is a little scary because we don't know what we are going to find out.
After school we read a Clifford book, I asked him simple questions after each page:
Is Clifford a d-o-g dog or a c-a-t cat
dog
I was holding Stephens hand, but he was moving his finger to the right letters, it is unmistakable the feeling that Stephen can actually spell and answer questions! I'm so glad Ido explained the need for some people to have the physical touch in order to be successful!
We finished the book, and found that Stephen knows his colors, can correctly answer yes and no questions and that he enjoys it. He was smiling the whole time! It is so exciting.
I asked Stephen what color Peter's shirt is and he typed yes not sure if he just wasn't listening or struggles with open ended questions. When I asked if it was r-e-d red or b-l-u-e blue he correctly typed red. I guess we'll just keep going, it is only the 1st day of him typing his answer.
A world changing discovery!
Friday May 16th:
The boys are on the Father and Son's outing tonight, so after getting Mable to bed I read the new book I just bought called "Ido (Eee-doh) In Autismland" -- what an awesome book. This boy was diagnosed with autism at 2.5 years old, his parents did everything they could; ABA therapy 40+ hours a week, and more... He wasn't making any progress and the therapists kept telling his parents that he wasn't capable of understanding simple things. On his 7th birthday his mom was helping him write birthday cards; she noticed his hand moving independent of hers, she asked him if he could read and write and they had a long conversation through writing! That started the battle of convincing therapists, teachers and administrators, but at least he could communicate with his mom!
So Ido, 5 years later starts writing his thoughts down, he would point to a letter on a card his mom would hold up and she would dictate every letter he pointed to (amazing! what a mom!). Some things that stood out most to me in this book were these:
"It's hard to speak because apraxia is like a bad phone connection. I know my thoughts are getting lost on the way to my mouth, I think of an idea. I try to say it and the wrong things come out..." pg 53
"I understand everything but sometimes my feet interfere with my thoughts, It's like apraxia in my body. I want to say "no." My mouth says "yes." I want to go to my parents' room. My feet go to my room. This is a terrible problem because then people assume I don't understand basic information." pg 54
"I point accurately on a letter board because I try so hard to communicate. It is a skill that's helped me to overcome much of my hand apraxia..." pg 55
***"It helps many autistic people to have someone touch or even support their arm when writing or communicating. This is due to our trouble initiating and getting our bodies to obey our minds. This slight touch seems to help unlock the sort of paralysis I have described." pg 78
***"In the past I internally lived in stims. The stim was entertainment, escape, compulsion, and the easiest way to deal with the frustrations of autism. It is like an alcoholic who runs to a bottle whenever he is sad or tense. it is a way to avoid working on things. It really makes the situation worse thought... In my Health class we are learning about drug abuse and alcoholism. I can't help but see a similarity in autistic stims." pg 139
"But stims are there tempting me. I get stressed or bored so I return to my trusty alternative to reality. Stims are a necessary outlet at times but they have to be in moderation. If not we become drunk on them and it's too hard to return to some self control. We need a lot of help in these times and lots of activity to keep our minds engaged." pg 139-140
"The problem with stims is that they make me and other autistic people remote, detached, and hard to connect to. I think this is how stims are different than biting nails, for example, which is a habit. Biting nails isn't a doorway into another realm, but stims are. it is the reason why I find it hard to eliminate them from my life. They are compelling, tempting, and easily accessed. To resist is hard beyond imagining. I think I'd love to have just one stim free day to have a respite and see what life can be without stims in it." pg 148
Such a good book, and so insightful! I am so grateful that I was lead to this book, I really feel I was inspired to look it up and buy it. I wonder what Stephen is capable of! This can change our lives forever!!!!
The boys are on the Father and Son's outing tonight, so after getting Mable to bed I read the new book I just bought called "Ido (Eee-doh) In Autismland" -- what an awesome book. This boy was diagnosed with autism at 2.5 years old, his parents did everything they could; ABA therapy 40+ hours a week, and more... He wasn't making any progress and the therapists kept telling his parents that he wasn't capable of understanding simple things. On his 7th birthday his mom was helping him write birthday cards; she noticed his hand moving independent of hers, she asked him if he could read and write and they had a long conversation through writing! That started the battle of convincing therapists, teachers and administrators, but at least he could communicate with his mom!
So Ido, 5 years later starts writing his thoughts down, he would point to a letter on a card his mom would hold up and she would dictate every letter he pointed to (amazing! what a mom!). Some things that stood out most to me in this book were these:
"It's hard to speak because apraxia is like a bad phone connection. I know my thoughts are getting lost on the way to my mouth, I think of an idea. I try to say it and the wrong things come out..." pg 53
"I understand everything but sometimes my feet interfere with my thoughts, It's like apraxia in my body. I want to say "no." My mouth says "yes." I want to go to my parents' room. My feet go to my room. This is a terrible problem because then people assume I don't understand basic information." pg 54
"I point accurately on a letter board because I try so hard to communicate. It is a skill that's helped me to overcome much of my hand apraxia..." pg 55
***"It helps many autistic people to have someone touch or even support their arm when writing or communicating. This is due to our trouble initiating and getting our bodies to obey our minds. This slight touch seems to help unlock the sort of paralysis I have described." pg 78
***"In the past I internally lived in stims. The stim was entertainment, escape, compulsion, and the easiest way to deal with the frustrations of autism. It is like an alcoholic who runs to a bottle whenever he is sad or tense. it is a way to avoid working on things. It really makes the situation worse thought... In my Health class we are learning about drug abuse and alcoholism. I can't help but see a similarity in autistic stims." pg 139
"But stims are there tempting me. I get stressed or bored so I return to my trusty alternative to reality. Stims are a necessary outlet at times but they have to be in moderation. If not we become drunk on them and it's too hard to return to some self control. We need a lot of help in these times and lots of activity to keep our minds engaged." pg 139-140
"The problem with stims is that they make me and other autistic people remote, detached, and hard to connect to. I think this is how stims are different than biting nails, for example, which is a habit. Biting nails isn't a doorway into another realm, but stims are. it is the reason why I find it hard to eliminate them from my life. They are compelling, tempting, and easily accessed. To resist is hard beyond imagining. I think I'd love to have just one stim free day to have a respite and see what life can be without stims in it." pg 148
Such a good book, and so insightful! I am so grateful that I was lead to this book, I really feel I was inspired to look it up and buy it. I wonder what Stephen is capable of! This can change our lives forever!!!!
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