JP is turning 5. We are getting to that point where it isn't as acceptable that he goes into the ladies restroom. Now, when it is just him and Mom. People are just going to have to deal with it. He is autistic and not able to do it all by himself. However, when Dad is with us we have decided that he should go with Dad to the restroom. (That noise you hear is Mom doing a jig of excitement to finally go to the bathroom alone!)
Well, here comes a new challenge. JP is very focused on words right now. "What does that spell" comes out of his mouth hundreds of times a day. He usually says it and then proceeds to sound it out. (When his interest level is there he can actually read novel materials). And thanks to a Leap Frog video he knows what sound every letter makes. Well, let's just say that men's restrooms are not typically as orderly as womens and there tends to be more "messages" written on the walls.
Here is what Dad heard. "What does that spell? Fffff uh....." The little reader was right on track until Dad stepped in and assured him that he didn't need to be reading that.
Oh boy!
Monday, December 18, 2006
Remember what goes in...will come out!
Watch what you say around your children. This is something "normal" parents learn early on. Some of us young Autism families get complacent. When our children are so young and non verbal we tend to forget that they can be still listening and absorbing. Then they get verbal skills and we face a new challenge. It becomes even more critical that we guard what information they take in. Because what goes in often gets stuck circling around and around in their brain and in our case becomes a mantra that we hear over and over again!
Well, the other day we received an email from an Aunt. It was titled, "Kiddie Poo Rap" and she said it was cute. So I loaded it up. Here is the problem. JP loves music and came scrambling into the room when he heard it. For your reference here is the site.
http://www.ladyskylar.com/swffiles/madeapoop.swf
For those who aren't up to listening, there are three babies rapping that they made a poop and telling their mommy to change them. It is catchy and it is cute. However, my autistic child who stims on songs is now singing the song. I should have known better!
Here is the problem. It took forever to potty train JP because of his communication issues. Even today if he so much as says potty, pee, or poop he gets wisked away to the bathroom. Now imagine his confusion when he gets sent to the bathroom everytime someone hears him singing his song.
The other night, I was sitting the kitchen addressing Christmas cards and Dad was hanging with the boys in the living room. I hear Dad saying, "Well, get to the bathroom then. If you have to poop you better get going". JP wasn't understanding Dad's sense of urgency and I felt the confusion level escalating in the room. So I humbly went in and explained to Dad that JP was singing a song and I had to admit that it was my fault it is now on his concert list.
So on one hand I rejoice that we are getting closer to "normal" with his appreciation of potty humor. Just like a typical child, he thought these babies singing about poop was hilarious but in his situation it makes the whole communication issue of when he needs to use the potty pretty darn difficult!
Well, the other day we received an email from an Aunt. It was titled, "Kiddie Poo Rap" and she said it was cute. So I loaded it up. Here is the problem. JP loves music and came scrambling into the room when he heard it. For your reference here is the site.
http://www.ladyskylar.com/swffiles/madeapoop.swf
For those who aren't up to listening, there are three babies rapping that they made a poop and telling their mommy to change them. It is catchy and it is cute. However, my autistic child who stims on songs is now singing the song. I should have known better!
Here is the problem. It took forever to potty train JP because of his communication issues. Even today if he so much as says potty, pee, or poop he gets wisked away to the bathroom. Now imagine his confusion when he gets sent to the bathroom everytime someone hears him singing his song.
The other night, I was sitting the kitchen addressing Christmas cards and Dad was hanging with the boys in the living room. I hear Dad saying, "Well, get to the bathroom then. If you have to poop you better get going". JP wasn't understanding Dad's sense of urgency and I felt the confusion level escalating in the room. So I humbly went in and explained to Dad that JP was singing a song and I had to admit that it was my fault it is now on his concert list.
So on one hand I rejoice that we are getting closer to "normal" with his appreciation of potty humor. Just like a typical child, he thought these babies singing about poop was hilarious but in his situation it makes the whole communication issue of when he needs to use the potty pretty darn difficult!
Sunday, December 10, 2006
Tuesday, December 05, 2006
Answers
Well, yesterday was a day spent seeking answers.
Baby T had a round of tests all to try to figure out what happened when he lost consciousness on us a few weeks ago. He was amazingly cooperative through a Chest Xray, EEG, EKG, and Echo. All in all it took us nearly 4 hours to get through it and he did it all with a 10 minute nap (on cue) during the EEG! How he managed to fall asleep with dozens of wires taped to his head I do not know but kudos to him!
During the whole affair I kept asking myself is it worth it to subject him to all these tests? Will they even tell us anything? It doesn't feel right to be putting my faith in them to tell me if he is medically okay or not. After all, this is the same establishment that sent us home from the ER having done no tests. They just assured me that healthy babies lose consciousness all the time. Apparently it doesn't mean that there is anything wrong with them. Oh, yeah, and my favorite. "Even if had been a seizure, what does him having a seizure have anything to do with his older brother's autism?" In fact, our tests were at the same hospital. These are the same people that I am now looking to to give me the "all clear". An all clear to what? Autism? They don't even seem to know about Autism so how can they assure me that we aren't going there? Ugh! Make these thoughts leave my head!!!
However last night while reflecting on the day I realized that T was giving us his own answers to our questions.
1. While cruising around the waiting room for the Chest Xray his attention was drawn to an older gentleman sitting nearby. T went to the chair next to him and tried to climb up. He looked at me and pointed to the man's head and said "hat". That was the first time he has said hat. And he referenced me while saying it!
2. While grabbing a bite to eat between tests, T was peeking at a gentleman at the next table. The man was encouraging the game of peekaboo. So I told T that he should say "hi". AND HE DID! He even waved his little hand! That was the first time for the word and the gesture! I haven't even thought to teach him it! He picked it up on his own!!!!
3. We were getting dressed after an exam. I was trying to stay upbeat for the little guy because he still had a long way to go so I said, "Good job Little Man! Give me five!" and put my hand up. I did it without really thinking. (We've been doing this a lot with JP but haven't thought to teach T yet) Of course I figured I would be the one seeking out his hand and giving the five. Nope! He reached right out and slapped my hand and shrieked at the same time. I'm not sure what he said but he continues to do it on cue! Believe me, we practice about every 5 minutes!
They may have performed some expensive tests to verify if his neurons are firing correctly. But I think I like the results we got during the tests.
Of course, I eagerly await theirs as well.
Baby T had a round of tests all to try to figure out what happened when he lost consciousness on us a few weeks ago. He was amazingly cooperative through a Chest Xray, EEG, EKG, and Echo. All in all it took us nearly 4 hours to get through it and he did it all with a 10 minute nap (on cue) during the EEG! How he managed to fall asleep with dozens of wires taped to his head I do not know but kudos to him!
During the whole affair I kept asking myself is it worth it to subject him to all these tests? Will they even tell us anything? It doesn't feel right to be putting my faith in them to tell me if he is medically okay or not. After all, this is the same establishment that sent us home from the ER having done no tests. They just assured me that healthy babies lose consciousness all the time. Apparently it doesn't mean that there is anything wrong with them. Oh, yeah, and my favorite. "Even if had been a seizure, what does him having a seizure have anything to do with his older brother's autism?" In fact, our tests were at the same hospital. These are the same people that I am now looking to to give me the "all clear". An all clear to what? Autism? They don't even seem to know about Autism so how can they assure me that we aren't going there? Ugh! Make these thoughts leave my head!!!
However last night while reflecting on the day I realized that T was giving us his own answers to our questions.
1. While cruising around the waiting room for the Chest Xray his attention was drawn to an older gentleman sitting nearby. T went to the chair next to him and tried to climb up. He looked at me and pointed to the man's head and said "hat". That was the first time he has said hat. And he referenced me while saying it!
2. While grabbing a bite to eat between tests, T was peeking at a gentleman at the next table. The man was encouraging the game of peekaboo. So I told T that he should say "hi". AND HE DID! He even waved his little hand! That was the first time for the word and the gesture! I haven't even thought to teach him it! He picked it up on his own!!!!
3. We were getting dressed after an exam. I was trying to stay upbeat for the little guy because he still had a long way to go so I said, "Good job Little Man! Give me five!" and put my hand up. I did it without really thinking. (We've been doing this a lot with JP but haven't thought to teach T yet) Of course I figured I would be the one seeking out his hand and giving the five. Nope! He reached right out and slapped my hand and shrieked at the same time. I'm not sure what he said but he continues to do it on cue! Believe me, we practice about every 5 minutes!
They may have performed some expensive tests to verify if his neurons are firing correctly. But I think I like the results we got during the tests.
Of course, I eagerly await theirs as well.
Friday, December 01, 2006
Be careful what you wish for...
You know how some of our ASD kids can be alone for hours and not care. JP used to be like this. I am not sure when it changed. I know he hasn’t been interested in his computer time lately. He doesn’t try to play his V.Smile for long stretches of time either. I just figured it was because he had mastered every game and was bored with them. But when did this change? How did it happen?
I think a huge part has been his brother’s entrance into our lives. When T came home, there were times that we had to put JP in front of videos or send him to go play trains. He was fine if he was alone. In fact, he preferred it over the wailing of his brother. However, after about a month, that changed. I remember Dad and I discussing that it felt like JP was a little jealous of the time T demanded. Although it raised concerns that we needed more special (and not just work) time with JP, it made me very excited! It meant that he liked our companionship! It meant that he could be a social being!!!!!
Well, I just realized the other day that JP is never alone anymore. He is so cute about asking us to play with him and I just figured it was a carryover from school. (These play skills are a focus at preschool) But now he actually will not go downstairs by himself. He will not play in his room by himself. This is good, right? Well…
Yesterday, I had put T down for his nap. However, after about 20 minutes he started coughing. And I am still freaked about his episode of a few weeks ago so I went in to settle him back down. However, in order to do so, I had to leave JP’s side. We had been playing trains in his bedroom. So I left him with complete instructions. “Stay here while Mommy puts T back to sleep. I will come back and play trains. Can you wait here for Mommy?” I believe he understood because he said, “Yes”. So I headed to T’s room.
T and I were rocking and fortunately it appeared that he was going to go back to sleep for me. He had his head on my shoulder and his breathing was getting heavy. Then I heard a noise coming down the hall. I knew that I had 2 options: go with it or quickly put T in the crib and likely wake him up. So I went with it.
As JP came into the room I gave him the “Shh” finger. We have worked on this guesture but it rarely works. He smiled and sat down on the floor and began playing with the toys in T’s room. Of course, he picked the loudest car. It has little balls that pop around when you drive it. T immediately popped up and within seconds was on the floor walking over to his big brother.
Now get this, JP gave T the “Shh” finger. Then he looked at me and said, “I don’t think T sleep.”
I think a huge part has been his brother’s entrance into our lives. When T came home, there were times that we had to put JP in front of videos or send him to go play trains. He was fine if he was alone. In fact, he preferred it over the wailing of his brother. However, after about a month, that changed. I remember Dad and I discussing that it felt like JP was a little jealous of the time T demanded. Although it raised concerns that we needed more special (and not just work) time with JP, it made me very excited! It meant that he liked our companionship! It meant that he could be a social being!!!!!
Well, I just realized the other day that JP is never alone anymore. He is so cute about asking us to play with him and I just figured it was a carryover from school. (These play skills are a focus at preschool) But now he actually will not go downstairs by himself. He will not play in his room by himself. This is good, right? Well…
Yesterday, I had put T down for his nap. However, after about 20 minutes he started coughing. And I am still freaked about his episode of a few weeks ago so I went in to settle him back down. However, in order to do so, I had to leave JP’s side. We had been playing trains in his bedroom. So I left him with complete instructions. “Stay here while Mommy puts T back to sleep. I will come back and play trains. Can you wait here for Mommy?” I believe he understood because he said, “Yes”. So I headed to T’s room.
T and I were rocking and fortunately it appeared that he was going to go back to sleep for me. He had his head on my shoulder and his breathing was getting heavy. Then I heard a noise coming down the hall. I knew that I had 2 options: go with it or quickly put T in the crib and likely wake him up. So I went with it.
As JP came into the room I gave him the “Shh” finger. We have worked on this guesture but it rarely works. He smiled and sat down on the floor and began playing with the toys in T’s room. Of course, he picked the loudest car. It has little balls that pop around when you drive it. T immediately popped up and within seconds was on the floor walking over to his big brother.
Now get this, JP gave T the “Shh” finger. Then he looked at me and said, “I don’t think T sleep.”
Tuesday, November 28, 2006
Beware of the Coke pirate
Okay, we were spoiled. JP spent nearly 4 1/2 years before he discovered soft drinks. Well, a few months ago, he discovered Coke and Pepsi. I don't know where you stand on the debate. Personally, I can't really tell them apart. My loyalty is that I drink whichever is available. (However, I don't do diet!) Anyway, the standing joke in our house is that you never get to finish your own soft drink. If JP sees you with one, he somehow manages to take it over.
For example, my mother is a diehard Coke fanatic. She quickly learned her lesson. She is what I call a "sipper". She will open a can and sip at it for hours. That just will not fly in our house! JP saw her Coke and of course politely requested some. She graciously poured some into a cup. He drank it. Then he also took her can and finished it. Of course, he still said thanks!
Well, now this story is going to get a little less adorable.
We went out for supper a few nights ago. When asked what I want to drink, it has just become habit to say "Coke/Pepsi". It is just Murphy's law that if you say "Coke" than they will go through the whole spiel about carrying Pepsi products. So I just try to cover my basis and slur the two brand names together. It usually works. I rarely know if I am drinking Coke or Pepsi but then I don't really care.
Well, the hubbie and I had both responded and to my surprise JP chimed in that he would like a Coke. He looked so proud to be saying it himself and to be honest I was quite proud. He doesn't usually respond to the waitstaff.
Okay, here is what she brought him. Can you see the problem?
The rest of the world understands that these two items are universally interchangeable. Try explaining that to my son. He FREAKED out! I know that he was proud of ordering for himself and I partly believe his meltdown was more severe because he felt that his communication attempt broke down. I could feel his frustration and disappointment.
He didn't seem so concerned about what he was drinking but rather what label was on the cup. He ordered a Coke and the cup should say "C-O-K-E" not "P-E-P-S-I"! He was more upset than I have seen him in a long time. There was no reasoning with him.
The family sitting next to us was amused for the first few minutes. The waitress felt bad. I just kept wondering how tolerant the world would be if this was my 14 year old son reacting this way rather than my 4 year old. Most would just assume it is a child thing--not an autism thing. But he won't always be a child.
We have worked so hard to avoid rigid patterns in our life. These situations blind side you and make you wonder if you can ever really equip him to deal with the ups and downs of our crazy world!
For example, my mother is a diehard Coke fanatic. She quickly learned her lesson. She is what I call a "sipper". She will open a can and sip at it for hours. That just will not fly in our house! JP saw her Coke and of course politely requested some. She graciously poured some into a cup. He drank it. Then he also took her can and finished it. Of course, he still said thanks!
Well, now this story is going to get a little less adorable.
We went out for supper a few nights ago. When asked what I want to drink, it has just become habit to say "Coke/Pepsi". It is just Murphy's law that if you say "Coke" than they will go through the whole spiel about carrying Pepsi products. So I just try to cover my basis and slur the two brand names together. It usually works. I rarely know if I am drinking Coke or Pepsi but then I don't really care.
Well, the hubbie and I had both responded and to my surprise JP chimed in that he would like a Coke. He looked so proud to be saying it himself and to be honest I was quite proud. He doesn't usually respond to the waitstaff.
Okay, here is what she brought him. Can you see the problem?
The rest of the world understands that these two items are universally interchangeable. Try explaining that to my son. He FREAKED out! I know that he was proud of ordering for himself and I partly believe his meltdown was more severe because he felt that his communication attempt broke down. I could feel his frustration and disappointment.He didn't seem so concerned about what he was drinking but rather what label was on the cup. He ordered a Coke and the cup should say "C-O-K-E" not "P-E-P-S-I"! He was more upset than I have seen him in a long time. There was no reasoning with him.
The family sitting next to us was amused for the first few minutes. The waitress felt bad. I just kept wondering how tolerant the world would be if this was my 14 year old son reacting this way rather than my 4 year old. Most would just assume it is a child thing--not an autism thing. But he won't always be a child.
We have worked so hard to avoid rigid patterns in our life. These situations blind side you and make you wonder if you can ever really equip him to deal with the ups and downs of our crazy world!
Friday, November 17, 2006
Reality Check
Last night I experienced the single worst moment of my life.
We were getting ready for bed. Baby T downed about half his bottle and then he and I were sitting on the floor doing the diaper and pajama thing. It was an ordinary night. He was standing up as I zipped the front zipper to his footy pjs. In my mind, I hear the woosh of the zipper, see him tipping the bottle to his mouth and then I hear some sort of noise. I can't describe the sound.
Then my baby just collapsed in my arms. He went stiff and unresponsive. His eyes were closed and he didn't seem to be breathing. My first thoughts were that he was choking but he hadn't had any opportunity to put anything into his mouth. He hadn't gagged or coughed before collapsing. He was turning red. I thumped his back. Still no reaction. He was just in my arms limp. His mouth area was turning blue.
I screamed for my husband who was downstairs. I scared the crap out of JP who was playing in the living room with us. He started crying but I was too frantic to deal with that. I yelled again. And again. Finally I carried T to the stairs and yelled directly into the basement. Dad came scurring up. He was freaked out. I was freaked out.
He grabbed T and grabbed the phone. I just stood there. What could I do? I headed to JP to calm him down but then realized that I couldn't leave T. I just stood there paralyzed.
As we were on the phone with 911, T opened his eyes. He was back! Thank God!
I have never been so scared in my life! He was a little out of it and kept nodding off. The 911 dispatcher told us to take him to Urgent Care just to check everything out. As we loaded him in the van, he smiled at his Daddy. That eased some of our anxiety.
That was the longest drive of my life. Then the Urgent Care folks told me I would have to take him to the Hospital Emergency room. So I loaded him up and set a new record for the the longest drive of my life. Of course, this is after 9 pm and he is a tired boy. I am alone with him in the car (Dad stayed home with JP) and T keeps dozing off. I am panicked. Is he sleeping or is he unconscious. He has not even made a peep since the "event".
Finally, we get to the hospital. He just seems to bounce back. He finally starts babbling again--a lot infact. He was friendly and smiling at the hospital personnel. He was up and exploring every nook and cranny in the exam room. He was acting fine. He didn't seem bothered at all.
I wish I had an explanation. I wish I had an assurance that this won't happen again. They couldn't give me one. But they don't think it was a seizure. He didn't twitch while unconscious and he had a pretty quick recovery. They say this "kind of thing"actually happens pretty often with young kids. They compared it to a fainting spell. But why would he have "fainted". He wasn't having a coughing attack. He wasn't in the midst of a tantrum. He was just getting ready to drink his bottle. I don't know...
But how do I relax? How do I go to bed at night with him in the other room? Those lifeless 2-3 minutes felt like an eternity. They will be etched in my mind forever. But I must say that everything (Autism included) has been put into perspective for me!
We were getting ready for bed. Baby T downed about half his bottle and then he and I were sitting on the floor doing the diaper and pajama thing. It was an ordinary night. He was standing up as I zipped the front zipper to his footy pjs. In my mind, I hear the woosh of the zipper, see him tipping the bottle to his mouth and then I hear some sort of noise. I can't describe the sound.
Then my baby just collapsed in my arms. He went stiff and unresponsive. His eyes were closed and he didn't seem to be breathing. My first thoughts were that he was choking but he hadn't had any opportunity to put anything into his mouth. He hadn't gagged or coughed before collapsing. He was turning red. I thumped his back. Still no reaction. He was just in my arms limp. His mouth area was turning blue.
I screamed for my husband who was downstairs. I scared the crap out of JP who was playing in the living room with us. He started crying but I was too frantic to deal with that. I yelled again. And again. Finally I carried T to the stairs and yelled directly into the basement. Dad came scurring up. He was freaked out. I was freaked out.
He grabbed T and grabbed the phone. I just stood there. What could I do? I headed to JP to calm him down but then realized that I couldn't leave T. I just stood there paralyzed.
As we were on the phone with 911, T opened his eyes. He was back! Thank God!
I have never been so scared in my life! He was a little out of it and kept nodding off. The 911 dispatcher told us to take him to Urgent Care just to check everything out. As we loaded him in the van, he smiled at his Daddy. That eased some of our anxiety.
That was the longest drive of my life. Then the Urgent Care folks told me I would have to take him to the Hospital Emergency room. So I loaded him up and set a new record for the the longest drive of my life. Of course, this is after 9 pm and he is a tired boy. I am alone with him in the car (Dad stayed home with JP) and T keeps dozing off. I am panicked. Is he sleeping or is he unconscious. He has not even made a peep since the "event".
Finally, we get to the hospital. He just seems to bounce back. He finally starts babbling again--a lot infact. He was friendly and smiling at the hospital personnel. He was up and exploring every nook and cranny in the exam room. He was acting fine. He didn't seem bothered at all.
I wish I had an explanation. I wish I had an assurance that this won't happen again. They couldn't give me one. But they don't think it was a seizure. He didn't twitch while unconscious and he had a pretty quick recovery. They say this "kind of thing"actually happens pretty often with young kids. They compared it to a fainting spell. But why would he have "fainted". He wasn't having a coughing attack. He wasn't in the midst of a tantrum. He was just getting ready to drink his bottle. I don't know...
But how do I relax? How do I go to bed at night with him in the other room? Those lifeless 2-3 minutes felt like an eternity. They will be etched in my mind forever. But I must say that everything (Autism included) has been put into perspective for me!
Tuesday, November 14, 2006
Birthday bloopers
Well, Baby T is no longer a baby. He is one year old! He had a fabulous birthday! He was such a happy guy and really seemed to enjoy all the attention. He greedily ate his spaghetti and made a mess with the frosting on his cake. We did have to break the cake open for him but once we did he devoured it as well. By the end of the meal he was head to toe frosting and spaghetti!
The only down side was his lingering cough. He has been having trouble eating solids because of the phlegm but I figured...it's his birthday! He has to eat with the big boys! So we start out with the camcorder aimed at him while he eats his spaghetti. After about 10 minutes I figure that is enough of him slurping noodles, so I turn it off.
Then he starts coughing. And these coughs are the heart stopping kind where you worry that he isn't going to get his breath back. So I am rubbing his back and trying to coax him through it. Finally he gets his breath and greedily reaches for more spaghetti. I wipe the tears and snot from his face (because he should only have birthday food on his face)! That is when I notice a noodle poking out his nostril. I try to get it and discover that it has not gone up the nose but is rather coming DOWN the nose! Ick!!!! And to make matters worse, he slurps it back up!
So we are all watching him in fascinated horror while he greedily continues to eat his spaghetti. It seems to me that a noodle in my nose might have slowed me down--but not T! What a trooper! So a few minutes later he breaks out in another cough. Fortunately, this time we were able to extract the noodle!
So I wonder, should I put the noodle in a baggie like his first hair cut clippings? I truly regret having turned off that camera!
The only down side was his lingering cough. He has been having trouble eating solids because of the phlegm but I figured...it's his birthday! He has to eat with the big boys! So we start out with the camcorder aimed at him while he eats his spaghetti. After about 10 minutes I figure that is enough of him slurping noodles, so I turn it off.
Then he starts coughing. And these coughs are the heart stopping kind where you worry that he isn't going to get his breath back. So I am rubbing his back and trying to coax him through it. Finally he gets his breath and greedily reaches for more spaghetti. I wipe the tears and snot from his face (because he should only have birthday food on his face)! That is when I notice a noodle poking out his nostril. I try to get it and discover that it has not gone up the nose but is rather coming DOWN the nose! Ick!!!! And to make matters worse, he slurps it back up!
So we are all watching him in fascinated horror while he greedily continues to eat his spaghetti. It seems to me that a noodle in my nose might have slowed me down--but not T! What a trooper! So a few minutes later he breaks out in another cough. Fortunately, this time we were able to extract the noodle!
So I wonder, should I put the noodle in a baggie like his first hair cut clippings? I truly regret having turned off that camera!
Thursday, November 09, 2006
Milestones and Obessions
Tomorrow T turns a year old! I can’t believe it! He is my baby! How can he be 1 already?
Although I am giddy with excitement to celebrate his birthday I have to admit that there has been this gray cloud hovering in the distance. You see, ever since we found out we were expecting a boy, my nerves have been vibrating. First I thought, “Yea! A baby. Well, 1 in 166. Okay I can handle that." Then I thought, “a boy. Yikes!" Then I thought, “a boy sibling to a boy on the spectrum. @*#$."
First I need to state that I am a compulsive worrier. I stress over everything. I don’t even need real issues to stress over! But damn, here I am with a real BIG issue. How am I going to keep from having my head explode?
So during my pregnancy, I convinced myself to relax and just enjoy these first months. You see, JP met all of his milestones his first year. He walked on cue, he babbled like he should. He even said, “Mommy” and “Daddy”. He was doing great…until his words faded, his interactions faded and he was “Autistic”. I told myself that I owed it to T to enjoy this first year and get to know the boy within. If that boy changes, than so be it, but I want to cherish this time.
And we really truly have! He is a beautiful happy boy with a smile glued on his face. He is calm and peaceful and a bit ornery. Grandma refers to him as Curious George because he always has that big goofy smile on his face! But how can he be a year old already!
I know that I need to find a way to control my anxiety? It can't be healthy for any of us if I start obsessing over him. Yet, I still find myself obsessing over where JP lost his skills. I look back at pictures and I see pretend play at 18 months. I always see smiles. But then, who takes pictures during a meltdown? JP babbled and had words. But when did he stop using them? When! I need to know! I swear that I can feel the stress growing and taking over my whole being. Will T continue to meet his developmental milestones or will he venture off on the path with his brother?
Either way, I know that he will be a remarkable young man and that he will be happy. I will see to that! I just really want my baby to not have to experience the frustrations and the confusions that his big brother experiences every waking moment. Please! Please let life be easier to him! PLEASE!
Although I am giddy with excitement to celebrate his birthday I have to admit that there has been this gray cloud hovering in the distance. You see, ever since we found out we were expecting a boy, my nerves have been vibrating. First I thought, “Yea! A baby. Well, 1 in 166. Okay I can handle that." Then I thought, “a boy. Yikes!" Then I thought, “a boy sibling to a boy on the spectrum. @*#$."
First I need to state that I am a compulsive worrier. I stress over everything. I don’t even need real issues to stress over! But damn, here I am with a real BIG issue. How am I going to keep from having my head explode?
So during my pregnancy, I convinced myself to relax and just enjoy these first months. You see, JP met all of his milestones his first year. He walked on cue, he babbled like he should. He even said, “Mommy” and “Daddy”. He was doing great…until his words faded, his interactions faded and he was “Autistic”. I told myself that I owed it to T to enjoy this first year and get to know the boy within. If that boy changes, than so be it, but I want to cherish this time.
And we really truly have! He is a beautiful happy boy with a smile glued on his face. He is calm and peaceful and a bit ornery. Grandma refers to him as Curious George because he always has that big goofy smile on his face! But how can he be a year old already!
I know that I need to find a way to control my anxiety? It can't be healthy for any of us if I start obsessing over him. Yet, I still find myself obsessing over where JP lost his skills. I look back at pictures and I see pretend play at 18 months. I always see smiles. But then, who takes pictures during a meltdown? JP babbled and had words. But when did he stop using them? When! I need to know! I swear that I can feel the stress growing and taking over my whole being. Will T continue to meet his developmental milestones or will he venture off on the path with his brother?
Either way, I know that he will be a remarkable young man and that he will be happy. I will see to that! I just really want my baby to not have to experience the frustrations and the confusions that his big brother experiences every waking moment. Please! Please let life be easier to him! PLEASE!
Tuesday, November 07, 2006
Mommy...I can't sleep!
How many couples have you heard arguing about their children still sleeping in their bed? You know, Dad is feeling like the odd man out because the 4 year-old is still occupying ¾ of the bed. Truth be told, I have secretly been jealous of those people.
My brother-in-law's family waged this war with our niece clear into grade school so we were committed to not do the co-sleeping thing. And although JP often had trouble sleeping, I just spent the time getting him back to sleep in his own bed. There were many times we slept in a “nest” on the floor because I couldn’t get him to sleep. I enjoyed the cuddle and just never considered bringing him back to our bed.
During the summer while I was pregnant with T, I spent a couple of mornings coaxing JP out of his bed to come “cuddle with Mommy”. He seemed to like that fine and even started coming in on his own once he woke up in the morning. However, he continued to wake up in the middle night and not seek us out. There were many nights that he would wake up crying hysterically and I have always thought it kind of sad that he would just sit on his bed sobbing and never think to come get me.
I got really nervous after T arrived and we couldn’t get the two different monitors to play nicely. I know some people thought I was being “overprotective” to still have a baby monitor in my 4 year old’s room but I just felt that it was necessary. But we just couldn’t figure out how to make it work and believe me—we tried! Finally I just had to acknowledge that it wasn’t possible to eavesdrop on his sleep (or lack of sleep) anymore! Of course I tried to train myself to listen for his cries but I kept telling myself that he is a big boy and would just have to learn to get us if he had a problem. He could do it, right?
Regretfully there was a time when my mother in law stayed with us. The next morning she commented on JP’s lack of sleep. I was horrified! He had been crying and I had not heard! Her room was next to his and she commented that she stayed away because she thought we were making him cry it out! I felt like the world's worst mom!
I am committed to figuring this out because like it or not there are times he will need to get up in the middle of the night. What if he gets sick? What if he has to go to the bathroom? What if he hears monsters in his closet? I have tried to make it a priority to get him to come find us. We have role-played. There are nightlights guiding his path to our room. I have even gone so far as to make it part of our bedtime routine. “What do you do if you wake up sad?” I ask every night. “Come and get Mommy and Daddy in their room” he now replies. But he has never come…until last Friday night!
He has a nasty cold and around 3am must have decided to come snuggle with Mommy!!! Needless to say, it was one of my best nights of sleep--ever!
My brother-in-law's family waged this war with our niece clear into grade school so we were committed to not do the co-sleeping thing. And although JP often had trouble sleeping, I just spent the time getting him back to sleep in his own bed. There were many times we slept in a “nest” on the floor because I couldn’t get him to sleep. I enjoyed the cuddle and just never considered bringing him back to our bed.
During the summer while I was pregnant with T, I spent a couple of mornings coaxing JP out of his bed to come “cuddle with Mommy”. He seemed to like that fine and even started coming in on his own once he woke up in the morning. However, he continued to wake up in the middle night and not seek us out. There were many nights that he would wake up crying hysterically and I have always thought it kind of sad that he would just sit on his bed sobbing and never think to come get me.
I got really nervous after T arrived and we couldn’t get the two different monitors to play nicely. I know some people thought I was being “overprotective” to still have a baby monitor in my 4 year old’s room but I just felt that it was necessary. But we just couldn’t figure out how to make it work and believe me—we tried! Finally I just had to acknowledge that it wasn’t possible to eavesdrop on his sleep (or lack of sleep) anymore! Of course I tried to train myself to listen for his cries but I kept telling myself that he is a big boy and would just have to learn to get us if he had a problem. He could do it, right?
Regretfully there was a time when my mother in law stayed with us. The next morning she commented on JP’s lack of sleep. I was horrified! He had been crying and I had not heard! Her room was next to his and she commented that she stayed away because she thought we were making him cry it out! I felt like the world's worst mom!
I am committed to figuring this out because like it or not there are times he will need to get up in the middle of the night. What if he gets sick? What if he has to go to the bathroom? What if he hears monsters in his closet? I have tried to make it a priority to get him to come find us. We have role-played. There are nightlights guiding his path to our room. I have even gone so far as to make it part of our bedtime routine. “What do you do if you wake up sad?” I ask every night. “Come and get Mommy and Daddy in their room” he now replies. But he has never come…until last Friday night!
He has a nasty cold and around 3am must have decided to come snuggle with Mommy!!! Needless to say, it was one of my best nights of sleep--ever!
Sunday, November 05, 2006
Another plagarism case in the books
Last night while I was experiencing Mommy alone time (shopping at Walmart) the boys were all hanging out. JP wanted to go downstairs where all of his train track resides. This has been an obsession for over a month now and frankly I am tired of tracks EVERYWHERE! I finally got it all put away a few days ago and hoped that he would forget about them for awhile. It worked until last night.
Well, he had it all strung out and specifically sought out Dad and T who were upstairs. He has been awesome at asking us "to come play with him." So Dad and T dutifully followed to the play room. After mere minutes, T was dismantling the track to chew on. (T actually seems to enjoy doing this just to get JP riled up) Usually, JP just says, "No T No!" I've been actually orchestrating this trying to work on developing the words to express that he is playing with the said item and making suggestions that he could give T one of the items of interest to appease him. (Imagine that -- sharing!!)
Well, last night we saw a new twist. JP yelled quite passionately, "No! No! Look what you did! Make that baby go away! He should not be here!
Dad was quite impressed and thrilled with the new use of language until later when they listened to our recent library acquisition...The Cat in the Hat on CD. JP has been listening to it nonstop and apparantly has the expression and voice quality down for the passionate cries of the fish...
But our fish said, "No! No!
Make that cat go away!
Tell that Cat in the Hat
You do NOT want to play.
He should not be here.
He should not be about.
He should not be here
When your mother is out!"
It is wonderful to see him apply it appropriately even if it was a bit overly dramatic for the situation. Always good to see new phrases get filed away in his repertoire.
Well, he had it all strung out and specifically sought out Dad and T who were upstairs. He has been awesome at asking us "to come play with him." So Dad and T dutifully followed to the play room. After mere minutes, T was dismantling the track to chew on. (T actually seems to enjoy doing this just to get JP riled up) Usually, JP just says, "No T No!" I've been actually orchestrating this trying to work on developing the words to express that he is playing with the said item and making suggestions that he could give T one of the items of interest to appease him. (Imagine that -- sharing!!)
Well, last night we saw a new twist. JP yelled quite passionately, "No! No! Look what you did! Make that baby go away! He should not be here!
Dad was quite impressed and thrilled with the new use of language until later when they listened to our recent library acquisition...The Cat in the Hat on CD. JP has been listening to it nonstop and apparantly has the expression and voice quality down for the passionate cries of the fish...
But our fish said, "No! No!
Make that cat go away!
Tell that Cat in the Hat
You do NOT want to play.
He should not be here.
He should not be about.
He should not be here
When your mother is out!"
It is wonderful to see him apply it appropriately even if it was a bit overly dramatic for the situation. Always good to see new phrases get filed away in his repertoire.
Thursday, November 02, 2006
Where is "there"?
JP turns 5 next month. 5! Five is a big kid! How can that be? He is still my baby, isn’t he? I look at him and see the things he is learning and I am so proud. We identify a weakness and craft a plan. He practices and learns what he needs to know and he succeeds (usually). He is doing great! I am so proud and I feel like he is going to get there.
But where is “there”? Up until now, “there” has been kindergarten in a regular classroom with all the “regular” kids. With his higher than average academic skills it just feels like that is where he is supposed to be. His teachers this year tell me how well he is doing in the “integrated preschool”. His SLP told me that he was almost indistinguishable. She felt that an outsider looking into their classroom wouldn’t be able to pick out the child with autism.
But I was there for the Halloween party...
Yes, he lined up with the other children for the group picture. But, no, he did not smile and while all the other kids were excitedly chattering away he just stared into space.
Yes, he frosted his cupcake and even ate it all. But there were no sprinkles or other fancy decorations for his cupcake. Cupcakes have frosting. That is it. They don’t have pretzels stuck in them (even if he likes pretzels). Pretzels do not go with cupcakes.
Yes, he decorated his paper pumpkin and it even looked like a Jack-o-lantern. Jack-o-lanterns have two eyes, one nose and a mouth. They do not have purple bow ties. It doesn’t matter if there is one here in front of him because Jack-o-lanterns do not wear purple bow ties!
Yes, he took his turn in the games even though he was the first one out of musical chairs. I imagine that not all 4 year olds understand that game. Perhaps he wasn’t alone. There were a couple other kids that had trouble with the games. But then there are supposed to be 8 special education peers in this class of 17.
I am glad I went to the Halloween party but I saw a lot! I saw creativity, mischief and competition. There were ninja warriors battling jedi knights. One jack-o-lantern builder even used the little circles (designed for the pupils) as nostrils. And the two boys left in the musical chairs game intuitively knew how to team up and beat the one girl that was left. How did they know all that!
How do I teach him all of that? Can I teach him all of that? Can we get "there"? Is that where we are supposed to be?
But where is “there”? Up until now, “there” has been kindergarten in a regular classroom with all the “regular” kids. With his higher than average academic skills it just feels like that is where he is supposed to be. His teachers this year tell me how well he is doing in the “integrated preschool”. His SLP told me that he was almost indistinguishable. She felt that an outsider looking into their classroom wouldn’t be able to pick out the child with autism.
But I was there for the Halloween party...
Yes, he lined up with the other children for the group picture. But, no, he did not smile and while all the other kids were excitedly chattering away he just stared into space.
Yes, he frosted his cupcake and even ate it all. But there were no sprinkles or other fancy decorations for his cupcake. Cupcakes have frosting. That is it. They don’t have pretzels stuck in them (even if he likes pretzels). Pretzels do not go with cupcakes.
Yes, he decorated his paper pumpkin and it even looked like a Jack-o-lantern. Jack-o-lanterns have two eyes, one nose and a mouth. They do not have purple bow ties. It doesn’t matter if there is one here in front of him because Jack-o-lanterns do not wear purple bow ties!
Yes, he took his turn in the games even though he was the first one out of musical chairs. I imagine that not all 4 year olds understand that game. Perhaps he wasn’t alone. There were a couple other kids that had trouble with the games. But then there are supposed to be 8 special education peers in this class of 17.
I am glad I went to the Halloween party but I saw a lot! I saw creativity, mischief and competition. There were ninja warriors battling jedi knights. One jack-o-lantern builder even used the little circles (designed for the pupils) as nostrils. And the two boys left in the musical chairs game intuitively knew how to team up and beat the one girl that was left. How did they know all that!
How do I teach him all of that? Can I teach him all of that? Can we get "there"? Is that where we are supposed to be?
Wednesday, November 01, 2006
What a treat
He did it! We had a great Halloween. He dutifully marched up to the door and did it step by step as we practiced. Of course there was always some sort of deviation. The first house had a frisky dog trying to get out. But we survived it!
Our biggest obstacle was that we don't like chocolate. It seems that everyone gives out chocolate. So when JP was given the choice to pick out his own candy from the bowl it took forever and a day for him to find a suitable option. Then there were the times he would grab several pieces. For awhile I felt like I was adding rules after every house. Be sure and only take one piece! You only reach for the candy if they don't put it in your pumpkin for you! You should always say thank you even if they give you chocolate.
My favorite moment was after he had learned the new rule for only taking one piece of candy. This homeowner apparently wanted to rid himself of candy and said, "take another". So JP turns back around and puts the original piece back in the bowl to "take another". It was really quite sweet. If only he listened that well for me. Had I told him to give me the candy back he would have given me a few choice words and some tears!
Another sweet memory will be his verbal closing to every transaction. He would say "thank you" to the candy giver. Then as we walked down the driveway he would say, "Oh, thank you Mommy! And my candy thanks you too!". It has to be a Pooh reference but I haven't placed it yet.
Anyway, Halloween was a success and not as haunting as in the past!
Our biggest obstacle was that we don't like chocolate. It seems that everyone gives out chocolate. So when JP was given the choice to pick out his own candy from the bowl it took forever and a day for him to find a suitable option. Then there were the times he would grab several pieces. For awhile I felt like I was adding rules after every house. Be sure and only take one piece! You only reach for the candy if they don't put it in your pumpkin for you! You should always say thank you even if they give you chocolate.
My favorite moment was after he had learned the new rule for only taking one piece of candy. This homeowner apparently wanted to rid himself of candy and said, "take another". So JP turns back around and puts the original piece back in the bowl to "take another". It was really quite sweet. If only he listened that well for me. Had I told him to give me the candy back he would have given me a few choice words and some tears!
Another sweet memory will be his verbal closing to every transaction. He would say "thank you" to the candy giver. Then as we walked down the driveway he would say, "Oh, thank you Mommy! And my candy thanks you too!". It has to be a Pooh reference but I haven't placed it yet.
Anyway, Halloween was a success and not as haunting as in the past!
Tuesday, October 31, 2006
Trick or Treat
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!
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!
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!
Saturday, September 30, 2006
The things that make me special
Despite all his gains the one thing that always stays around is JPs continual verbal stimming. On one hand, it is usually language based so it doesn't seem so odd (for a 4 year old). But eventually he will need to learn to keep some of the thoughts inside his head!
For the past couple of months we have been continually serenaded by an adorable version of the instrumental music that plays at the beginning of Superman. The entire thing--note by note!
However about 3 weeks ago we transitioned from Superman to Winnie the Pooh. I have to admit I was happy for the transition as Pooh seems to teach more life lessons such as friendship and sharing. But our latest stim reinforces that Pooh is doing his job...
Imagine his sweet little voice singing, “The things that make me special--are the things that make me, me!”
What a great song to have repeating inside his head! This is one stim that I prey stays in his repertoire!
For the past couple of months we have been continually serenaded by an adorable version of the instrumental music that plays at the beginning of Superman. The entire thing--note by note!
However about 3 weeks ago we transitioned from Superman to Winnie the Pooh. I have to admit I was happy for the transition as Pooh seems to teach more life lessons such as friendship and sharing. But our latest stim reinforces that Pooh is doing his job...
Imagine his sweet little voice singing, “The things that make me special--are the things that make me, me!”
What a great song to have repeating inside his head! This is one stim that I prey stays in his repertoire!
Monday, September 25, 2006
Can't even describe the feeling
How can such an emotion exist? I can't even describe it.
We have had a rough few days as the sensory obstacles have been very overwhelming. We failed at soccer pictures, we were unsuccessful with school pictures, and he has pretty much refused to participate in soccer. He is willingly on the field but he "flies" superman style from goal to goal rather than participating in the game. Yesterday, he was in pure panic mode when I tried to force him to stay with the group as the children took turns dribbling the ball to the goal. He would fall on the ball rather than kick it. It was like he was paralyzed with fear.
It is such an infuriating feeling to see him failing to do something that you know he can physically accomplish. Sometimes you have to remind yourself that just because he has the motor skills DOES NOT mean that he CAN do it. Those damn sensory malfunctions render him paralyzed sometimes. I wanted to yell at him to stand up and kick the damn ball. I felt like he was just being stubborn and overly dramatic. Then I felt nauseous for thinking that way because I spend a lot of my time angry with others who believe that about him. We've even been told that "we need to stop spoiling him". How could I have turned against him too?
Last night, before going to bed I snuck in to give him his goodnight kiss. He is so peaceful in his sleep. He is such a beautiful and bright boy. I always try to finish my day with that vision so that I can remind myself what this is all about.
Then I crawled into bed and reflected on the past week. He has been a mess. I have felt so powerless. He is so smart and capable. He can go so far--but can I get him there? There is so much responsibility when you become a parent. I envy those parents whose children can learn from the world around them. These parents don't have an easy job by any means but their job is manageable. Parenting a child with Autism (high functioning or not) is so overwhelming. How can I teach him everything he needs to know to survive (and thrive) in this crazy world? How can I foresee every obstacle he is going to hit and how do I know how to get him through it?
I want to quit from exhaustion and fear but I can't. I can't let him down. He deserves the world. I look at him and I feel this pull to get it done. His smile and soul gives me the energy to go on but still I feel nauseous at the same time. How can I feel such a purpose yet be so lost at the same time?
We have had a rough few days as the sensory obstacles have been very overwhelming. We failed at soccer pictures, we were unsuccessful with school pictures, and he has pretty much refused to participate in soccer. He is willingly on the field but he "flies" superman style from goal to goal rather than participating in the game. Yesterday, he was in pure panic mode when I tried to force him to stay with the group as the children took turns dribbling the ball to the goal. He would fall on the ball rather than kick it. It was like he was paralyzed with fear.
It is such an infuriating feeling to see him failing to do something that you know he can physically accomplish. Sometimes you have to remind yourself that just because he has the motor skills DOES NOT mean that he CAN do it. Those damn sensory malfunctions render him paralyzed sometimes. I wanted to yell at him to stand up and kick the damn ball. I felt like he was just being stubborn and overly dramatic. Then I felt nauseous for thinking that way because I spend a lot of my time angry with others who believe that about him. We've even been told that "we need to stop spoiling him". How could I have turned against him too?
Last night, before going to bed I snuck in to give him his goodnight kiss. He is so peaceful in his sleep. He is such a beautiful and bright boy. I always try to finish my day with that vision so that I can remind myself what this is all about.
Then I crawled into bed and reflected on the past week. He has been a mess. I have felt so powerless. He is so smart and capable. He can go so far--but can I get him there? There is so much responsibility when you become a parent. I envy those parents whose children can learn from the world around them. These parents don't have an easy job by any means but their job is manageable. Parenting a child with Autism (high functioning or not) is so overwhelming. How can I teach him everything he needs to know to survive (and thrive) in this crazy world? How can I foresee every obstacle he is going to hit and how do I know how to get him through it?
I want to quit from exhaustion and fear but I can't. I can't let him down. He deserves the world. I look at him and I feel this pull to get it done. His smile and soul gives me the energy to go on but still I feel nauseous at the same time. How can I feel such a purpose yet be so lost at the same time?
Saturday, September 23, 2006
I love it...I hate it
My current project is getting JP over his fear of those inflatable bouncers. (He calls them castles.) He has seen castles at camp, at OT, at parties, and at a carnival. He loves and hates them. He giggles and loves to watch the other children gleefully hopping around. But you would think we were torturing him to even get him to touch the outside of the thing. He even got so nervous that he vomited when they were inflating one at camp this summer!
Several weeks ago, we ran into our neighbors at a carnival and they seemed intrigued by JPs anxieties (obvious due to his hands clamped over his ears). I explained that we weren't there to ride the rides but to take pictures to help us talk about the various activities. I was going to make a social story for JP and that we would be reviewing that story (over and over again) so that the next carnival JP goes to won't be so overwhelming. Once he knew what to expect at a carnival we might be able to get him to consider riding some rides. (I can dream, right?)
Anyway, I explained it. I figured they were just being polite. Much of our conversation took place right next to the "castle" and the ferris wheel. Their 3 and 4 year old grandchildren were waving to them every time the ferris wheel went around and around. My 4 year old was clutched to my leg mesmerized by the castle but paralyzed with fear.
This week that neighbor brought over a small inflatable castle. Her daughter had received a bigger one as a gift. They thought it might have a hole but it could be patched and it was mine if I wanted it!!!!
Did I ever!
Several weeks ago, we ran into our neighbors at a carnival and they seemed intrigued by JPs anxieties (obvious due to his hands clamped over his ears). I explained that we weren't there to ride the rides but to take pictures to help us talk about the various activities. I was going to make a social story for JP and that we would be reviewing that story (over and over again) so that the next carnival JP goes to won't be so overwhelming. Once he knew what to expect at a carnival we might be able to get him to consider riding some rides. (I can dream, right?)
Anyway, I explained it. I figured they were just being polite. Much of our conversation took place right next to the "castle" and the ferris wheel. Their 3 and 4 year old grandchildren were waving to them every time the ferris wheel went around and around. My 4 year old was clutched to my leg mesmerized by the castle but paralyzed with fear.
This week that neighbor brought over a small inflatable castle. Her daughter had received a bigger one as a gift. They thought it might have a hole but it could be patched and it was mine if I wanted it!!!!
Did I ever!
What exactly does it mean to break wind?
The other night the whole family was lounging in the living room. JP was playing with his trains, T was crawling around, Hubbie was stretched out in the recliner and I was sitting on the couch taking it all in. I was blissfully thinking... "See! We can be a normal family!" then for some reason my thoughts turned to the reality that I was the only woman in a house full of men and what that might mean for my future.
Then I heard a noise. JP had farted. He just carried on like nothing happened. So the mom in me decided I needed to teach him to say "excuse me". Then the therapist in me thought about how most of the other adolescent boys I know were farting on purpose and all about telling fart jokes. I wasn't sure I was ready to push JP into that social norm but I though a few steps down that path might be good.
So I playfully jumped on the floor by him and said, "What was that!!!" He gave me a blank look and I wasn't sure if he knew the words so I said, "You farted!" and then whispered, "You should say excuse me." He repeated the "excuse me" and went on playing.
A few minutes later it happened again. I gasped and playfully said, "What was that!" JP turned and looked my direction and said, "My poop burped."
Then I heard a noise. JP had farted. He just carried on like nothing happened. So the mom in me decided I needed to teach him to say "excuse me". Then the therapist in me thought about how most of the other adolescent boys I know were farting on purpose and all about telling fart jokes. I wasn't sure I was ready to push JP into that social norm but I though a few steps down that path might be good.
So I playfully jumped on the floor by him and said, "What was that!!!" He gave me a blank look and I wasn't sure if he knew the words so I said, "You farted!" and then whispered, "You should say excuse me." He repeated the "excuse me" and went on playing.
A few minutes later it happened again. I gasped and playfully said, "What was that!" JP turned and looked my direction and said, "My poop burped."
Wednesday, September 13, 2006
Mom without a manual goes online
Can I really think of anything interesting to say? Who knows. Perhaps this will serve as my much needed personal therapy!
The husband and I keep saying that I need to find an outlet aside from Autism and therapy for our son. Does this count? Probably not, but I feel better already!
My son, JP, is almost 5 years old! That is so hard to believe! He was diagnosed with Autism just before he turned 3. When the pediatrician said the word, "Autism", I was shocked. I knew absolutely nothing about Autism but it didn't sound good. We went to the pediatrician because of sensory and social issues that weren't making sense but I never would have thought autism. I didn't expect to be told, "There is virtually nothing you can do. He can learn and function in life but expect him to live at home with you." Such optimism! Thank God, I quit listening after he said the word autism.
So I hurried home to my best friend, the Internet. Yep, Autism. I see it clearly now. I had never seen or met an autistic individual before. I had no basis for comparison. Perhaps I was living in my fairy tale world but I didn't know about an epidemic of Autism cases. I didn't know that the rates were increasing at such an alarming rate. I didn't know to be on the lookout for this dreadful predator!
Now, it seems to be everywhere. Of course, now I have a reason to notice...
Of course, I need to be fair and also mention my beautiful youngest, T. He just turned 10 months old and he is doing awesome. Now, every mom is quick to brag that their child is walking or talking. I'm not bragging, I'm just breathing a sigh of relief. Keep your fingers crossed with me, folks. His older brother met all of his milestones as well ...until the day we realized he was autistic. I try to not obsess over T's development but it is hard not to watch and take notes. He is having to travel Autismville along with his family while helping his older brother. I just really REALLy don't want him to have his own citizenship papers!
The husband and I keep saying that I need to find an outlet aside from Autism and therapy for our son. Does this count? Probably not, but I feel better already!
My son, JP, is almost 5 years old! That is so hard to believe! He was diagnosed with Autism just before he turned 3. When the pediatrician said the word, "Autism", I was shocked. I knew absolutely nothing about Autism but it didn't sound good. We went to the pediatrician because of sensory and social issues that weren't making sense but I never would have thought autism. I didn't expect to be told, "There is virtually nothing you can do. He can learn and function in life but expect him to live at home with you." Such optimism! Thank God, I quit listening after he said the word autism.
So I hurried home to my best friend, the Internet. Yep, Autism. I see it clearly now. I had never seen or met an autistic individual before. I had no basis for comparison. Perhaps I was living in my fairy tale world but I didn't know about an epidemic of Autism cases. I didn't know that the rates were increasing at such an alarming rate. I didn't know to be on the lookout for this dreadful predator!
Now, it seems to be everywhere. Of course, now I have a reason to notice...
Of course, I need to be fair and also mention my beautiful youngest, T. He just turned 10 months old and he is doing awesome. Now, every mom is quick to brag that their child is walking or talking. I'm not bragging, I'm just breathing a sigh of relief. Keep your fingers crossed with me, folks. His older brother met all of his milestones as well ...until the day we realized he was autistic. I try to not obsess over T's development but it is hard not to watch and take notes. He is having to travel Autismville along with his family while helping his older brother. I just really REALLy don't want him to have his own citizenship papers!
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