Halloween.
This really has not been an event the past couple of years. When he was 3 JP was a fireman. It was the least intrusive costume I could find. It was obvious he was a fireman even if he didn't wear the hat or carry the hatchet. He didn't care. He didn't like candy. He didn't particularly care to visit people. We went to about 6 houses. I had prepared him a social story. He knew to knock on the door and say "Trick or Treat". I forgot to tell him that he had to wait until the person came to the door. And forget thank you because as soon as the homeowner looked at him he took off running down the sidewalk. God forbid they talked to him! He even cried when one boisterous neighbor greeted us.
Last year Halloween went better. He was in the midst of a Toy Story fixation. So we had a Buzz Lightyear AND a Woody costume. He couldn't decide which one to wear so we wore one through the neighborhood and the other while visiting our family. His Dad took him door to door as I was 9 months pregnant with little T. They made it up and down our block. JP wasn't really into it but he did go and there were no tears. I would consider that progress!
This year we are in the midst of a Winnie the Pooh fixation. JP is Winney the Pooh. T is Tigger. JP has had his costume on since 10am this morning. They had a party at preschool and it has just stayed on since. (Even through several potty visits!) We wore it to speech and won't take it off now as we "are going trick or treating".
I am excited. I feel like the child getting excited to go out myself. I hope he does well. I want him to enjoy it.
We have practiced but he needs work. Especially on being polite when given candy other than a sucker. He doesn't like chocolate and is eager to let you know he wants a sucker from you. But I figure that the homeowner will just assume that I have a rude child and not an autistic child. I suppose that is progress. Atleast he is going through the motions. We can work on ettiquete later!
Tuesday, October 31, 2006
Monday, October 30, 2006
What is the cost?
Where can I buy a tree? You know-- the kind that money grows on? Life is just getting heavier and heavier on the psyche. It just keeps getting harder and harder to breathe. I just can’t figure out an alternative that I can live with.
I suppose most of my disappointment is because I grew up living hand to mouth. I went to college to better my situation. After college we both landed decent jobs and I swore I would never end up living that way again. And we wouldn’t be--if it weren’t for all of the special services that we have to pay for out of our own pockets. No thanks to the government. No thanks to insurance. No thanks to the many respite facilities where they qualify you on your income and don’t adjust it for the out of pocket costs of the multitude of therapies.
We live in the red. Thank God for credit cards! But I hate being one of those people…you know the indulgent kind that lives beyond their means. Perhaps my biggest resentment is that I am one of “those people” yet I don’t get to feel the high from having the newest gadget or regular pampering sessions. It just isn’t fair that I have all the anxiety that comes with debt but none of the highs to help medicate that unease.
Yes, I don’t work outside the home. Of course, working is an option. After all, I do have a master’s degree—someone out there has to be willing to pay me money. But who would take JP to OT on Monday, speech therapy on Tuesday, his 1 on 1 on Wednesday, his speech playgroup on Thursday or his 1 on 1 on Friday? Who would devise our home program, supervise and implement it? Other families are paying $2000 a month for a consultant to create their home program. Where is my $2000 for creating JP's curriculum? Wait a minute, where in the hell are those families getting their $2000!
The school vans could take him to day care and back as long as we find care within our school district. How crazy is that…not only would we have to find child care (that we trusted) but they would have to be in this one quadrant of the metro area. Even if I could find someone willing to pay me, they would have to be flexible in allowing me time off for doctor visits and all the other incidentals.
I know when Autism enters a family sometimes the mom has to quit work. I have also seen where mom has to go back to work. Neither option seems viable. Even if we could have gotten JP enrolled in the program at the local Med Center I wouldn’t have made enough to cover the $56,000 a year tuition. Not to mention that program ran from 10 to 3. Those are not any office hours I would have been able to maintain! Then we would still have all the other therapy costs. We would still have childcare costs for T.
I've heard that 80% of disability families end in divorce. I also heard that that rate is 90% for Autism families. That isn't too hard to believe considering most breaking points for couples stem from finances. I can't imagine how a family could survive if both parents didn't feel the same way about how far to pursue therapies for the child. Fortunately I have the world's greatest husband who sees the growth in our son and is willing to keep sacrificing. I just hope that we stay together on this...
I just can't figure out how this works. How are we supposed to survive? Are we not supposed to do everything humanly possible to help our child? These services have brought words to my son. They have brought eye contact and smiles. They have taught him to appreciate other people and they have made him feel comfortable in his own body. These therapies are fixing the imbalances that society and nature created. How can I stop? They are giving him a future. How can I not mortgage ours to give that to him?
I suppose most of my disappointment is because I grew up living hand to mouth. I went to college to better my situation. After college we both landed decent jobs and I swore I would never end up living that way again. And we wouldn’t be--if it weren’t for all of the special services that we have to pay for out of our own pockets. No thanks to the government. No thanks to insurance. No thanks to the many respite facilities where they qualify you on your income and don’t adjust it for the out of pocket costs of the multitude of therapies.
We live in the red. Thank God for credit cards! But I hate being one of those people…you know the indulgent kind that lives beyond their means. Perhaps my biggest resentment is that I am one of “those people” yet I don’t get to feel the high from having the newest gadget or regular pampering sessions. It just isn’t fair that I have all the anxiety that comes with debt but none of the highs to help medicate that unease.
Yes, I don’t work outside the home. Of course, working is an option. After all, I do have a master’s degree—someone out there has to be willing to pay me money. But who would take JP to OT on Monday, speech therapy on Tuesday, his 1 on 1 on Wednesday, his speech playgroup on Thursday or his 1 on 1 on Friday? Who would devise our home program, supervise and implement it? Other families are paying $2000 a month for a consultant to create their home program. Where is my $2000 for creating JP's curriculum? Wait a minute, where in the hell are those families getting their $2000!
The school vans could take him to day care and back as long as we find care within our school district. How crazy is that…not only would we have to find child care (that we trusted) but they would have to be in this one quadrant of the metro area. Even if I could find someone willing to pay me, they would have to be flexible in allowing me time off for doctor visits and all the other incidentals.
I know when Autism enters a family sometimes the mom has to quit work. I have also seen where mom has to go back to work. Neither option seems viable. Even if we could have gotten JP enrolled in the program at the local Med Center I wouldn’t have made enough to cover the $56,000 a year tuition. Not to mention that program ran from 10 to 3. Those are not any office hours I would have been able to maintain! Then we would still have all the other therapy costs. We would still have childcare costs for T.
I've heard that 80% of disability families end in divorce. I also heard that that rate is 90% for Autism families. That isn't too hard to believe considering most breaking points for couples stem from finances. I can't imagine how a family could survive if both parents didn't feel the same way about how far to pursue therapies for the child. Fortunately I have the world's greatest husband who sees the growth in our son and is willing to keep sacrificing. I just hope that we stay together on this...
I just can't figure out how this works. How are we supposed to survive? Are we not supposed to do everything humanly possible to help our child? These services have brought words to my son. They have brought eye contact and smiles. They have taught him to appreciate other people and they have made him feel comfortable in his own body. These therapies are fixing the imbalances that society and nature created. How can I stop? They are giving him a future. How can I not mortgage ours to give that to him?
Thursday, October 26, 2006
Friendly Interactions
To be honest until this summer I avoided taking JP to the library. With his continual verbal stimming, I really didn't think he could be quiet enough. But we made it a goal for the summer and he actually grew quite fond of going.
Well, on our third visit he eagerly marched right in and back to the children's corner. When we got there we saw a woman and a couple children sitting on the floor talking. I am sure this looked a lot like "circle time" at school. To my astonishment, he marched right up and said, "Can I play with you?"!!!!! I was so amazed to see it happen I stood there stunned. Unfortunately that is where his intent for interaction ended. He sat down off to the side and started playing with a big toy (one of those with the beads that slide around on the wires). He loves these and calls them "trains". We love trains!
So he had basically announced his arrival but then sat down and ignored them. The lady tried to ask his name. He said, "I'm wearing Superman" and pointed to his shirt. She asked if he liked that toy. He said, "It's a train". This is where the little girl stepped in and said that is a bead. To my horror, JP screamed "IT'S A TRAIN" at the top of his lungs. I worried that this would end our interaction but the little girl surprised me. She then pointed to a red one and said "it's blue". JP said, "It's red!". He was still pretty passionate (and loud) but less agitated. After a few repetitions he giggled as he corrected her. They played this game for a few minutes. She thought they were playing but I think JP just thought she was plain stupid.
So after awhile she lost interest and I got JP redirected and looking at some books. I was breathing a sigh of relief and thinking how proud I was that he blended in. Yes, he was quirky but that nice little girl played along and they had fun. I was feeling like the world might just be more accepting and friendly than I had given it credit.
Then along came another little girl. The girls were talking right by JP. I think he knew he had to introduce himself again but what came out is "I am wearing Superman". The new little girl just looked at him with a confused look. Our "friend" then rolled her eyes and said, "He's weird, let's go" and they ran off.
My heart felt so heavy I thought it was going to fall out of my chest. I couldn't breathe. It was so sad. On the other hand, JP didn't seem to react one way or the other. He just sat back down and looked at his book. Obviously, I took it harder than he did.
I reflect on this visit to the library with both sadness and joy. My little boy who always avoided other children actually asked to join in (even if it was on his terms--to play with a preferred toy). But that was huge! He was able to "converse" even though the little girl really carried the burden of keeping the "conversation" going as they played their labeling game. There was proof that we are making progress...but I was also reminded that we have a ways to go. And unfortunately there was the reminder that the world is not always kind.
I just keep trying to focus on the positives...
Well, on our third visit he eagerly marched right in and back to the children's corner. When we got there we saw a woman and a couple children sitting on the floor talking. I am sure this looked a lot like "circle time" at school. To my astonishment, he marched right up and said, "Can I play with you?"!!!!! I was so amazed to see it happen I stood there stunned. Unfortunately that is where his intent for interaction ended. He sat down off to the side and started playing with a big toy (one of those with the beads that slide around on the wires). He loves these and calls them "trains". We love trains!
So he had basically announced his arrival but then sat down and ignored them. The lady tried to ask his name. He said, "I'm wearing Superman" and pointed to his shirt. She asked if he liked that toy. He said, "It's a train". This is where the little girl stepped in and said that is a bead. To my horror, JP screamed "IT'S A TRAIN" at the top of his lungs. I worried that this would end our interaction but the little girl surprised me. She then pointed to a red one and said "it's blue". JP said, "It's red!". He was still pretty passionate (and loud) but less agitated. After a few repetitions he giggled as he corrected her. They played this game for a few minutes. She thought they were playing but I think JP just thought she was plain stupid.
So after awhile she lost interest and I got JP redirected and looking at some books. I was breathing a sigh of relief and thinking how proud I was that he blended in. Yes, he was quirky but that nice little girl played along and they had fun. I was feeling like the world might just be more accepting and friendly than I had given it credit.
Then along came another little girl. The girls were talking right by JP. I think he knew he had to introduce himself again but what came out is "I am wearing Superman". The new little girl just looked at him with a confused look. Our "friend" then rolled her eyes and said, "He's weird, let's go" and they ran off.
My heart felt so heavy I thought it was going to fall out of my chest. I couldn't breathe. It was so sad. On the other hand, JP didn't seem to react one way or the other. He just sat back down and looked at his book. Obviously, I took it harder than he did.
I reflect on this visit to the library with both sadness and joy. My little boy who always avoided other children actually asked to join in (even if it was on his terms--to play with a preferred toy). But that was huge! He was able to "converse" even though the little girl really carried the burden of keeping the "conversation" going as they played their labeling game. There was proof that we are making progress...but I was also reminded that we have a ways to go. And unfortunately there was the reminder that the world is not always kind.
I just keep trying to focus on the positives...
Wednesday, October 11, 2006
UP or DOWN
The past few days have been somewhat volitile. JP has been verbally stimming a lot but it is different as the stims have been related to the here and now. For example, at speech therapy when the therapist took the flashcards out of the metal tin, JP kept chanting in a singsong voice, “There is another one in there”. (She had left the ones they already completed in the tin.) So to try to get him off that focus she took them all out. He still chanted it over and over again. She showed him it was empty. He just kept chanting with a spaced out grin on his face.
Sometimes he relishes in being goofy and just won’t focus and do what he is supposed to. He gets goofy and then starts stimming on that behavior. This happens even when we don’t encourage or reward the goofy behavior. So how do we bring him back to reality? It feels so wrong to threaten to punish him but this behavior is not appropriate. In fact, sometimes he thinks he is being playful and I fear squashing that behavior will make him withdraw. I rejoice in that free spirit and don’t want him to be all work and no play. I don't want him to be a robot.
This afternoon, Kristine (one of the college students I hired to do some 1 on 1 therapy with him) was working on a Thomas the Tank Engine puzzle. This therapy is pretty much just scheduled playtime. My current students are not formally trained and don’t have much experience with Autism. I figure this is okay because at this point my biggest goals relate to socialization. I make them a schedule and they do things like play games, do puzzles, read books, and color. My current goal is for him to follow the schedule and learn to play with others—such as taking turns. Worst case scenario, I am just paying for babysitting so that I can get something done around the house.
Anyway, JP has done this puzzle numerous times and apparently just didn’t want to do it. He was giggling and just being obnoxious. Kristine was patiently trying to get him engaged but he was just lying on the ground spinning circles. He would take a piece and toss it behind her. Again he was giggling and being playful rather than whining, kicking or screaming. Still it was inappropriate behavior. So I stepped in.
I entered the room and told him that he needed to stop messing around and start doing his work. He wasn’t playing with Kristine and she was there to play with him. If he didn’t get to work and play nicely, Kristine was going to have to put him in timeout. He immediately sat up and picked up a puzzle piece. He is very sensitive to raised emotions and does not like my stern voice. Most of the time, he starts crying if I so much as raise my voice. (And I have yet to even yell at him!) I stood there a few minutes while he “pretended” to do the puzzle. Then he said, “Mommy leave”. He then told Kristine he wanted to go to his bedroom. This could mean two things: "I want to get away from where Mom can overhear us" or "I’m done with this puzzle and I want to play trains". She said no and managed to get him through the puzzle. I was actually very impressed with how she reigned him in.
I sat in the kitchen listening to their interactions and did a silent clap when they finished the puzzle. Then I was floored. They were celebrating the completion of the puzzle and all of a sudden I hear little footsteps running into the kitchen. He exclaims, “Mommy, its finished”. I was shocked that he was reporting back to me. Usually, it is out of sight--out of mind. I congratulated him and told him how proud I was that he got to work and got the job done. Apparently that wasn’t enough. He said, “Mommy, need to come look”. So I did. He showed it off so proudly.
So I don’t know whether to be up or down. He has been so repetitive lately with his language and downright annoying with his stims. But he referenced back to me to let me know that he did the puzzle AND he had to seek me out to do so!
UP, down, UP down…the story of our lives.
Sometimes he relishes in being goofy and just won’t focus and do what he is supposed to. He gets goofy and then starts stimming on that behavior. This happens even when we don’t encourage or reward the goofy behavior. So how do we bring him back to reality? It feels so wrong to threaten to punish him but this behavior is not appropriate. In fact, sometimes he thinks he is being playful and I fear squashing that behavior will make him withdraw. I rejoice in that free spirit and don’t want him to be all work and no play. I don't want him to be a robot.
This afternoon, Kristine (one of the college students I hired to do some 1 on 1 therapy with him) was working on a Thomas the Tank Engine puzzle. This therapy is pretty much just scheduled playtime. My current students are not formally trained and don’t have much experience with Autism. I figure this is okay because at this point my biggest goals relate to socialization. I make them a schedule and they do things like play games, do puzzles, read books, and color. My current goal is for him to follow the schedule and learn to play with others—such as taking turns. Worst case scenario, I am just paying for babysitting so that I can get something done around the house.
Anyway, JP has done this puzzle numerous times and apparently just didn’t want to do it. He was giggling and just being obnoxious. Kristine was patiently trying to get him engaged but he was just lying on the ground spinning circles. He would take a piece and toss it behind her. Again he was giggling and being playful rather than whining, kicking or screaming. Still it was inappropriate behavior. So I stepped in.
I entered the room and told him that he needed to stop messing around and start doing his work. He wasn’t playing with Kristine and she was there to play with him. If he didn’t get to work and play nicely, Kristine was going to have to put him in timeout. He immediately sat up and picked up a puzzle piece. He is very sensitive to raised emotions and does not like my stern voice. Most of the time, he starts crying if I so much as raise my voice. (And I have yet to even yell at him!) I stood there a few minutes while he “pretended” to do the puzzle. Then he said, “Mommy leave”. He then told Kristine he wanted to go to his bedroom. This could mean two things: "I want to get away from where Mom can overhear us" or "I’m done with this puzzle and I want to play trains". She said no and managed to get him through the puzzle. I was actually very impressed with how she reigned him in.
I sat in the kitchen listening to their interactions and did a silent clap when they finished the puzzle. Then I was floored. They were celebrating the completion of the puzzle and all of a sudden I hear little footsteps running into the kitchen. He exclaims, “Mommy, its finished”. I was shocked that he was reporting back to me. Usually, it is out of sight--out of mind. I congratulated him and told him how proud I was that he got to work and got the job done. Apparently that wasn’t enough. He said, “Mommy, need to come look”. So I did. He showed it off so proudly.
So I don’t know whether to be up or down. He has been so repetitive lately with his language and downright annoying with his stims. But he referenced back to me to let me know that he did the puzzle AND he had to seek me out to do so!
UP, down, UP down…the story of our lives.
Thursday, October 05, 2006
The price of independence
Several months ago I created a computerized social story for JP using his favorite software, "My Bookshelf". I was able to load pictures of him completing step by step his morning process. The software is awesome because you can pair words with the pictures and then when he clicks from page to page it will read the story to him. For awhile I was making story after story because it was all he wanted to do. We made pretty good strides during that time too! I wish he could get fixated on it again!
It was the most amazing thing. Previously, he would get so distracted while dressing that we (both he and I) almost always got frustrated to the point of meltdowns. After his social story, he was practically dressing himself! It was cute too because he would recite the story (word by word) as he did each step. He even repeated the explanation that when "it was warm he wore shorts and when it was cold he wore long pants". This continued throughout the summer and the 100 degree heat even when long pants were a thing of the past!
So I guess I have gotten complacent and perhaps a little spoiled. I hand him his clothes and direct him to the bathroom. I then get his little brother out of the crib and proceed to get him ready for the day. After I get T loaded into the highchair I follow up with JP who is usually partially dressed. I am able to redirect him to finish dressing and get him to the kitchen to eat breakfast.
Yesterday JP was still in the bathroom so I called to him to come eat breakfast. A quick scan of the bathroom didn't show any left over clothing and he looked put together. I do remember having the conscious thought that he was doing so well getting himself ready.
Breakfast came and went. The school van came and they went. Our morning passed. Finally it was time for him to get home from school. I went out to the van to greet him and to my dismay saw what I neglected to that morning. His jeans were on backwards.
Now if they were sweats or windpants no one would know but his jean pockets were a little conspicuous glaring at me from the front of his little body! Oops!
Perhaps I need to slow down a little bit and do some inspections!
It was the most amazing thing. Previously, he would get so distracted while dressing that we (both he and I) almost always got frustrated to the point of meltdowns. After his social story, he was practically dressing himself! It was cute too because he would recite the story (word by word) as he did each step. He even repeated the explanation that when "it was warm he wore shorts and when it was cold he wore long pants". This continued throughout the summer and the 100 degree heat even when long pants were a thing of the past!
So I guess I have gotten complacent and perhaps a little spoiled. I hand him his clothes and direct him to the bathroom. I then get his little brother out of the crib and proceed to get him ready for the day. After I get T loaded into the highchair I follow up with JP who is usually partially dressed. I am able to redirect him to finish dressing and get him to the kitchen to eat breakfast.
Yesterday JP was still in the bathroom so I called to him to come eat breakfast. A quick scan of the bathroom didn't show any left over clothing and he looked put together. I do remember having the conscious thought that he was doing so well getting himself ready.
Breakfast came and went. The school van came and they went. Our morning passed. Finally it was time for him to get home from school. I went out to the van to greet him and to my dismay saw what I neglected to that morning. His jeans were on backwards.
Now if they were sweats or windpants no one would know but his jean pockets were a little conspicuous glaring at me from the front of his little body! Oops!
Perhaps I need to slow down a little bit and do some inspections!
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