I am reading a book right now, written by a 12 year old girl. The title is 'The Boy Who Ate Stars'. The caption on the back reads...When I grow up, I want to teach autistic children. I know one already, he's called Matthew and he's my neighbor. Matthew was four when he came into my life and, to be honest, we got off to a rocky start. Now I see alot of him, and each time I can't help thinking how special he is because he's like nobody I've ever met.
I had to take a small break. As I am reading this with a lump in my throat, and I look to Nathan with his worker, and such pride and frusteration hits me. They are working on probes, and programs. He recites the answers like 'Rain Man'. But, he is answering them!! What is your name? Nathan, Nathan Cormier. What is your mommy's name.. what is your Daddy's name. Phone number? Where do you live (today he said 'in a home' yesterday he said earth) Do you go to Daycare? What is your friends name? (sometimes he says an actual name.. other times he says toys) How old are you? (I'm 4, he says with gusto) Do you have a brother? (yea) Do you have a sister? (sometimes he says yea.. other times he says.. No, I not a sister, I a big boy!!) Do you have pets? (a pig, a bird, a fish..) What are their names?(pig, bird, fish..) But, other times he answers those perfectly. Nish is a black cat. Ostara white, brown, and black cat... etc..
These probes are just basic.. they will get more complicated and involved. And as he gets some wrong, he will be taught over and over until he does get it right. It does get pretty scriptive. But, I guess that is a start to forming a base, and then as his communication developes he can add more onto it. Like, we were out the other day. And someone asked him what his name was, he said.. My name is Nathan, and This is my Mommy. He does show pride, and wants to learn.. and it ticks me off to no end when for years I've asked him 'How are you? (I don't know).. I say, I'm good. anyways.. just after a couple days Laura has him saying.. I'm good. I could pull out my hair. Using the same way that I have been working with him. Lol.
Right now he is fixated on dot to dots.. or Connect the dots. It's hard to get him to try something else. Or he gets mad. We are working with him to use words instead of actions.. saying, Whatever, That's fine'. It's pretty cute hearing him say that one. or No big deal, It's OK. It allows him to self-talk through difficult times.
So far, he is flowing through his programs. Yesterday, he got 3 out 16 steps correct.. Today, he got 6!! Another one, yesterday he got 20%, today he got 40%. He doubled in a day. These are based on a craft program that he has to do as much as he can by himself without prompting, or what not.. like, colouring, cutting, pasting. Its all on a 'map' that he has to follow.
So far, they haven't gone back to 'sabotaging'. I think they are just getting these programs into play. Teaching him self talk and independant play. As more programs come in.. or his perfectionist comes out, or as more behaviors surface then we will deal? I don't know. He's so random and inconsistent as to what upsets him and what I think he'll freak out over, and then he doesn't.
Thursday, April 22, 2010
Thursday, April 15, 2010
A reminder and an eye opener
It's been awhile since I updated. And, trueth be told, I don't know where to begin. We had an awesome Easter weekend with the inlaws, BBQ's and chocolate.. who can ask for anything more. We went to French lake for a day of throwing rocks in the water (one of Nathan's most favourite things to do). Jason took Nathan to the camp with a couple of his friends. I went out with the girls and got re-united with Tequila. Man, what a fun night!!
I'm at a place in Nathan's therapy where things are getting difficult. And getting hard to put into words. I had one of my regular guests today and when she saw me... she saw something and just gave me a hug and asked me what is going on. She knows about Nathan and the intensity of his therapy. I did talk to her and I'm sure left her overwhelmed and her saying she couldn't imagine what I am going through. I can't imagine what I am going through. To hear my son saying 'I want my Mommy' and there is NOTHING I can do... anyways.. let me get on track of what is going on.
Things are coming down now, into his 'programs' and pushing behaviors to sabotage them. Yes, I am using the word sabotage as it is the word the clinical supervisor chose to use. Now, I do like this word. As I am completely aware that Nathan can't go to school, or through life with his behaviors. And he HAS GOT to deal with his emotions and not always getting his way. He is such a perfectionist and can get quite upset if things aren't just so. Just a couple of examples here.. if we are doing a puzzle we have to start with the same piece in a same to same piece sequence. If we get a new toy and play one way.. its always the same way. Jason is better at pushing him and switching things up, getting Nathan going but just to the edge of meltdown. Me.. I push a little, but then I step away and say ok.. well, I don't want to play anymore then. Or try to explain to him that its ok to get upset, or mad.. but you don't always get what you want, and I am going to use this puzzle piece here.
He has Bakugans and knows exactly what bakugan goes with what card. We were playing with them one day. And I said to his worker ( Laura ) 'watch this..' and put a wrong bakugan on a card. Well he fixed it. And it amazed her how he had them all memorized when we are looking at them wondering how the hell he could tell the difference when they are all rolled up as ball. So, we extended on this amazing memory of his and switched a few more. He put them back.. saying 'this bakugan on this card.. this one goes on this card.. etc'. We got him to close his eyes and switched a bunch more. *Laughs* he takes an exasperated breath got upset and put them back. We did it again.. He looks.. then HE switched a bunch up and looks to me and says.. 'Now, you mad'. He wanted me to understand this made him mad.. so he switched them and wanted ME to be mad. I didn't play that game.. we turned it around to be funny, laughing etc.. then put them away.
Ok.. back on track.. The clinical supervisor wanted to see one of his behaviors. And an example we talked about was how he couldn't circle a shape in a pattern sequence that he had to trace it. She said, do you think he would do it now? We tried, and sure enough.. he got quite upset and wanted to fix it. She turned the page, and did it again. Now, there was TWO pages that were 'wrong' he wanted to go back and fix the first page.. knowing now that there were 2 pages.. and she turned the page again and circled the pattern instead of tracing the shape. He went into a full blown meltdown. She turns to me and says " We are going to sabotage that behavior".
Now, I knew going into this therapy that this was going to happen. How could it not? I know my son. I know his issues. But, it was always me dealing with it. I have my strictness and I guess my limits. They are pushing the limits, forcing behaviors to get his reactions. And, I am also completely aware that it is going to get worse. But, at the same time better. They are trained to help Nathan deal with his emotions and to understand its' Ok to do this, or that. Or someone might do it this way, and that's Ok too.
I know this post is jumbled and kinda all over the place. And, I have left things out. Nathan has been random since that visite. Not quite himself. I think he lost a little bit of trust he developed with his worker and she has been trying to gain that back. He's been crying for me, and kinda lost as to what to do. When he cries for me, I have to let it go.. If I get a nod, then I can step in and take my boy in my arms and bring him down. If he wants me to read him a story, I have to talk him into letting Laura read his story when I just want to curl up with him and read him 10.
I am leaving this post now and I can assure you I'll get up in the morning with my morning coffee and fill in the blanks. This one is of the negative side.. the draining side.. The side that has left me weak. I will post the assurances and encouragement that also transpired that is going to make this all worth while. In final.. Pray for us. Pray for Nathan and knowing his is getting the best help he can. Pray for strength. For results.. and a good nights sleep. I love you all, and thank you for your support.
I'm at a place in Nathan's therapy where things are getting difficult. And getting hard to put into words. I had one of my regular guests today and when she saw me... she saw something and just gave me a hug and asked me what is going on. She knows about Nathan and the intensity of his therapy. I did talk to her and I'm sure left her overwhelmed and her saying she couldn't imagine what I am going through. I can't imagine what I am going through. To hear my son saying 'I want my Mommy' and there is NOTHING I can do... anyways.. let me get on track of what is going on.
Things are coming down now, into his 'programs' and pushing behaviors to sabotage them. Yes, I am using the word sabotage as it is the word the clinical supervisor chose to use. Now, I do like this word. As I am completely aware that Nathan can't go to school, or through life with his behaviors. And he HAS GOT to deal with his emotions and not always getting his way. He is such a perfectionist and can get quite upset if things aren't just so. Just a couple of examples here.. if we are doing a puzzle we have to start with the same piece in a same to same piece sequence. If we get a new toy and play one way.. its always the same way. Jason is better at pushing him and switching things up, getting Nathan going but just to the edge of meltdown. Me.. I push a little, but then I step away and say ok.. well, I don't want to play anymore then. Or try to explain to him that its ok to get upset, or mad.. but you don't always get what you want, and I am going to use this puzzle piece here.
He has Bakugans and knows exactly what bakugan goes with what card. We were playing with them one day. And I said to his worker ( Laura ) 'watch this..' and put a wrong bakugan on a card. Well he fixed it. And it amazed her how he had them all memorized when we are looking at them wondering how the hell he could tell the difference when they are all rolled up as ball. So, we extended on this amazing memory of his and switched a few more. He put them back.. saying 'this bakugan on this card.. this one goes on this card.. etc'. We got him to close his eyes and switched a bunch more. *Laughs* he takes an exasperated breath got upset and put them back. We did it again.. He looks.. then HE switched a bunch up and looks to me and says.. 'Now, you mad'. He wanted me to understand this made him mad.. so he switched them and wanted ME to be mad. I didn't play that game.. we turned it around to be funny, laughing etc.. then put them away.
Ok.. back on track.. The clinical supervisor wanted to see one of his behaviors. And an example we talked about was how he couldn't circle a shape in a pattern sequence that he had to trace it. She said, do you think he would do it now? We tried, and sure enough.. he got quite upset and wanted to fix it. She turned the page, and did it again. Now, there was TWO pages that were 'wrong' he wanted to go back and fix the first page.. knowing now that there were 2 pages.. and she turned the page again and circled the pattern instead of tracing the shape. He went into a full blown meltdown. She turns to me and says " We are going to sabotage that behavior".
Now, I knew going into this therapy that this was going to happen. How could it not? I know my son. I know his issues. But, it was always me dealing with it. I have my strictness and I guess my limits. They are pushing the limits, forcing behaviors to get his reactions. And, I am also completely aware that it is going to get worse. But, at the same time better. They are trained to help Nathan deal with his emotions and to understand its' Ok to do this, or that. Or someone might do it this way, and that's Ok too.
I know this post is jumbled and kinda all over the place. And, I have left things out. Nathan has been random since that visite. Not quite himself. I think he lost a little bit of trust he developed with his worker and she has been trying to gain that back. He's been crying for me, and kinda lost as to what to do. When he cries for me, I have to let it go.. If I get a nod, then I can step in and take my boy in my arms and bring him down. If he wants me to read him a story, I have to talk him into letting Laura read his story when I just want to curl up with him and read him 10.
I am leaving this post now and I can assure you I'll get up in the morning with my morning coffee and fill in the blanks. This one is of the negative side.. the draining side.. The side that has left me weak. I will post the assurances and encouragement that also transpired that is going to make this all worth while. In final.. Pray for us. Pray for Nathan and knowing his is getting the best help he can. Pray for strength. For results.. and a good nights sleep. I love you all, and thank you for your support.
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