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!
Saturday, September 30, 2006
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!
Subscribe to:
Posts (Atom)
