"You laugh because I'm different. I laugh because you're all the same."
Monday, February 13, 2012
And the beat goes on
Tyler continues to be doing better behaviorally. He had a pretty good weekend with us and he had a good morning this morning. The past 2 says he has shown pride in dressing himself with only being asked once. I hope it continues!
Tyler's 3rd tooth is almost out!!! It is just barely hanging on. He wiggled it so much saturday that it got all swollen and irritated. But it looks better now. I STILL can't believe my child is losing teeth let alone already on his third and fourth. I'm glad it's not scary to him and he actually feels good about it.
-Tylers Mommy
Thursday, February 9, 2012
Still Good
We are still going good! We have daily issues, several daily issues, but the "level" has been brought waaay down! Today the lead therapist even noticed a difference :). He continues to have rough days in school. Today he did well though. Lets hope this keeps going :) It is much more manageable for his mom.
-Tylers Mommy
-Tylers Mommy
Sunday, February 5, 2012
Two Steps Forward?
Though I am weary of the impending 2 steps back, I do feel joy in being able to share that the past 4 days was a little better.
Ty did get in trouble every day at school. It's not entirely his fault as I really need to come up with a better way to remember his medication. But the issues weren't violent and that is good.
Though he had infractions daily in therapy, they were to a much lesser degree then weeks prior. We continue to work on hitting and spitting. But overall his outbursts and tantrums were short and manageable. Though my stress this week was high, it wasn't just over current occurrences. It was more the bigger picture. But the past few days have given me hope. The changes to his behavioral plan are going well.
We had an exceptionally good weekend with great behaviors from Tyler :). We visited grandma on Saturday and dealt with some small behavioral issues that I very calmly dealt with and the new method resulted in him gaining control of himself and adjusting his behavior. So no meltdowns, tantrums or screaming. He was just such a joy to be around. Tomorrow starts a new week and I hope that it is a good one.
-Tyler's Mommy
Though he had infractions daily in therapy, they were to a much lesser degree then weeks prior. We continue to work on hitting and spitting. But overall his outbursts and tantrums were short and manageable. Though my stress this week was high, it wasn't just over current occurrences. It was more the bigger picture. But the past few days have given me hope. The changes to his behavioral plan are going well.
We had an exceptionally good weekend with great behaviors from Tyler :). We visited grandma on Saturday and dealt with some small behavioral issues that I very calmly dealt with and the new method resulted in him gaining control of himself and adjusting his behavior. So no meltdowns, tantrums or screaming. He was just such a joy to be around. Tomorrow starts a new week and I hope that it is a good one.
-Tyler's Mommy
Thursday, February 2, 2012
Brutally Honest
Back in December I spent four days in the hospital. I had been dealing with significant headaches and migraines for weeks. Sometimes my medication would help along with other methods that I use and sometimes they wouldn't. One morning I woke up with a headache. When I wake up with the headaches they are much worse and I am usually bed bound most of the day. I could not even get Tyler off to school my husband had to do it.
As the morning progressed I started feeling more and more ill. I was weak and dizzy, nauseous and shaky. This does happen when I get my headaches, but it was 10 times magnified. It was unlike any other migraine I had. I started to worry it was something worse. I started to worry it was some kind of diabetic issue I was having despite not having diabetes. I made it downstairs and tried to bring up and eat a bowl of cereal. I was so weak I could barely eat it. I quickly got worse and tried to take a shower. In the shower I started to get extremely ill. I got out and could not even dress myself due to shaking and feeling extremely weak. I knew something was really wrong and I needed help. I called my friend and she walked over to my house to bring me to the hospital. It took her 10 to 15 minutes to get here but it felt like an eternity. I started to feel confused and disoriented. I held onto the phone because I was close to calling 911.
My friend arrived and helped me into the car. She said that I looked very very ill. She said I was white as a ghost and looked scary. She brought me to the ER and they took me right in. They immediately hooked me up to IVs. They administered Zofran for the nausea, additional pain medications, and gave me Ativan. In the ER they did blood work and a CT scan with contrast. I had a hard time talking. I had to think hard to produce words and follow conversations. My blood pressure was high as well as my heart rate.
The CT scan did not show any issues. They decided to admit me. During my admittance they ran EVERY test. They even gave me an MRI. Everything looked OK, except that the MRI showed indications of migraines and both the MRI and CT showed chronic sinus disease.
Even though I got into the ER at 10am, I wasn't able to get into a room until 7pm. My friend stayed with me the whole time. At around 10pm I had a scary episode. I suddenly felt like I was unable to breath. I was alone in the room but my friend was outside the door. I called for her and said I need someone immediately I can't breath. They came in and I got very cold and clammy. They took my oxygen saturation and it had dropped to 78 and my blood pressure went way up. I became very unaware of my surroundings. They immediately put me on 3 liters of oxygen and got my o2 stats back up. They brought me down to 2liters, anything lower and my o2 dropped. I soon became more aware and when I opened my eyes I found that there were 7 nurses in the room. I was on oxygen all night and it helped me feel SO much better. I felt like my head was getting air. They put on a bright red bracelet and put me as high risk and put an alarm on my bed...I was not allowed to get up without a nurse. They tried to force me to use a bed pan, but they were able to bring over a portable potty. I couldn't even wipe myself.
My blood pressure continued to run high for the next 2 days.
I required zofran, pain meds, anti-dizzy medication like clockwork. Everything they tried didn't work. By the third day I worked on walking around and getting strength back. I started feeling better by the evening and knew I could go home the forth day.
In the end, they determined that I was having cluster migraines brought on by stress. They stated that they can be very painful and debilitating. Some doctors had a hard time agreeing this was the route of the problem, because even if my head did not hurt at given times, the rest of my body still reacted as though I was having a severe migraine. Other doctors said that my head could be better due to the meds at that given time, but my body has gone through so much it is still reacting.
At one point I had an EKG done that indicated an abnormal heart rhythm that is commonly caused by stressed.
I went home and it took about 5 more days to return to my normal self. Then Christmas came and went and soon after I started to feel myself going down that route again. I was told to try magnesium supplements. I have been on them now for 3 weeks and they DO seem to be helping. I am going from migraines 4-5 times a week to 1-2 times a week...and that may be because I don't always remember to take the magnesium.
Anyways. Tylers behaviors are getting worse and worse. Today he spit on the other therapist...in her face, on her shirt and on her pants. This time it was not brought on by any apparent tantrum or rage. They were being silly and out of no where he did it. We have decided to alter his program and provide him with consequences. I made a desperate phone call into our social worker, whom we have seen since the summer. I stated things were getting pretty bad, that Tyler is showing significant signs of oppositional defiant disorder and I'm feeling desperate and despair. She is going to make some phone calls. There are certain people, therapists, that can help with ADHD and ODD behaviors which is our number one priority right now. Tyler got in trouble at school for hurting another child at recess. It WAS a mistake, they were playing a fighting game. Tyler is having a hard time understanding why he is still in trouble even though it was a mistake. This is the autism side of him. He doesn't "get it" and until it does, things are just going to continue to get worse.
We took him to the park today and he threatened to spit on other kids. He also hit another child on the playground. He wasn't really trying to hurt the child and he was not angry. But he is not understanding things. He knows when he hits in tantrums and spits, that it is wrong. But he can not generalize, he can not differentiate.
These behaviors. The ADHD and ODD side of him, are far more stressful and difficult to deal with than his autism issues. His autism issues are annoying, his adhd and odd issues are severe and affecting him in much more significant ways right now. This is causing me even more stress. It is 3am and I am still awake. Yesterday I got 2.5 hours of sleep. I tried napping during the day and I could not. We are not heading on night 2. I have a history of going through periods of insomnia, sometimes really bad. And we are now in one of those periods. I can not calm my body or mind. I can not calm my fears or my soul. I am so worried for the child that is currently sleeping peacefully and beautifully across the hall. The child that I love with every fiber of my existence. What we are going through is not OK. It is not fair. He deserves so much more than what life has handed to him at this point. I want him to be happy, healthy and successful. I am so tired of fighting for everything for him to be able to achieve that. It is exhausting and draining. I am starting to lose hope and ambition. I am not giving up. I will not giving up. But my body is warning me now that it is going to crash again if I don't do something. I'm in therapy, I tried medication, I get a lot of me time, I have found joy and satisfaction within cleaning my home, we are able to pay our bills and feed our family, our cars are healthy, we can get from point a to point b, we are able to smile and laugh.
But misery and pain can be so overpowering.
-Tylers Mommy
As the morning progressed I started feeling more and more ill. I was weak and dizzy, nauseous and shaky. This does happen when I get my headaches, but it was 10 times magnified. It was unlike any other migraine I had. I started to worry it was something worse. I started to worry it was some kind of diabetic issue I was having despite not having diabetes. I made it downstairs and tried to bring up and eat a bowl of cereal. I was so weak I could barely eat it. I quickly got worse and tried to take a shower. In the shower I started to get extremely ill. I got out and could not even dress myself due to shaking and feeling extremely weak. I knew something was really wrong and I needed help. I called my friend and she walked over to my house to bring me to the hospital. It took her 10 to 15 minutes to get here but it felt like an eternity. I started to feel confused and disoriented. I held onto the phone because I was close to calling 911.
My friend arrived and helped me into the car. She said that I looked very very ill. She said I was white as a ghost and looked scary. She brought me to the ER and they took me right in. They immediately hooked me up to IVs. They administered Zofran for the nausea, additional pain medications, and gave me Ativan. In the ER they did blood work and a CT scan with contrast. I had a hard time talking. I had to think hard to produce words and follow conversations. My blood pressure was high as well as my heart rate.
The CT scan did not show any issues. They decided to admit me. During my admittance they ran EVERY test. They even gave me an MRI. Everything looked OK, except that the MRI showed indications of migraines and both the MRI and CT showed chronic sinus disease.
Even though I got into the ER at 10am, I wasn't able to get into a room until 7pm. My friend stayed with me the whole time. At around 10pm I had a scary episode. I suddenly felt like I was unable to breath. I was alone in the room but my friend was outside the door. I called for her and said I need someone immediately I can't breath. They came in and I got very cold and clammy. They took my oxygen saturation and it had dropped to 78 and my blood pressure went way up. I became very unaware of my surroundings. They immediately put me on 3 liters of oxygen and got my o2 stats back up. They brought me down to 2liters, anything lower and my o2 dropped. I soon became more aware and when I opened my eyes I found that there were 7 nurses in the room. I was on oxygen all night and it helped me feel SO much better. I felt like my head was getting air. They put on a bright red bracelet and put me as high risk and put an alarm on my bed...I was not allowed to get up without a nurse. They tried to force me to use a bed pan, but they were able to bring over a portable potty. I couldn't even wipe myself.
My blood pressure continued to run high for the next 2 days.
I required zofran, pain meds, anti-dizzy medication like clockwork. Everything they tried didn't work. By the third day I worked on walking around and getting strength back. I started feeling better by the evening and knew I could go home the forth day.
In the end, they determined that I was having cluster migraines brought on by stress. They stated that they can be very painful and debilitating. Some doctors had a hard time agreeing this was the route of the problem, because even if my head did not hurt at given times, the rest of my body still reacted as though I was having a severe migraine. Other doctors said that my head could be better due to the meds at that given time, but my body has gone through so much it is still reacting.
At one point I had an EKG done that indicated an abnormal heart rhythm that is commonly caused by stressed.
I went home and it took about 5 more days to return to my normal self. Then Christmas came and went and soon after I started to feel myself going down that route again. I was told to try magnesium supplements. I have been on them now for 3 weeks and they DO seem to be helping. I am going from migraines 4-5 times a week to 1-2 times a week...and that may be because I don't always remember to take the magnesium.
Anyways. Tylers behaviors are getting worse and worse. Today he spit on the other therapist...in her face, on her shirt and on her pants. This time it was not brought on by any apparent tantrum or rage. They were being silly and out of no where he did it. We have decided to alter his program and provide him with consequences. I made a desperate phone call into our social worker, whom we have seen since the summer. I stated things were getting pretty bad, that Tyler is showing significant signs of oppositional defiant disorder and I'm feeling desperate and despair. She is going to make some phone calls. There are certain people, therapists, that can help with ADHD and ODD behaviors which is our number one priority right now. Tyler got in trouble at school for hurting another child at recess. It WAS a mistake, they were playing a fighting game. Tyler is having a hard time understanding why he is still in trouble even though it was a mistake. This is the autism side of him. He doesn't "get it" and until it does, things are just going to continue to get worse.
We took him to the park today and he threatened to spit on other kids. He also hit another child on the playground. He wasn't really trying to hurt the child and he was not angry. But he is not understanding things. He knows when he hits in tantrums and spits, that it is wrong. But he can not generalize, he can not differentiate.
These behaviors. The ADHD and ODD side of him, are far more stressful and difficult to deal with than his autism issues. His autism issues are annoying, his adhd and odd issues are severe and affecting him in much more significant ways right now. This is causing me even more stress. It is 3am and I am still awake. Yesterday I got 2.5 hours of sleep. I tried napping during the day and I could not. We are not heading on night 2. I have a history of going through periods of insomnia, sometimes really bad. And we are now in one of those periods. I can not calm my body or mind. I can not calm my fears or my soul. I am so worried for the child that is currently sleeping peacefully and beautifully across the hall. The child that I love with every fiber of my existence. What we are going through is not OK. It is not fair. He deserves so much more than what life has handed to him at this point. I want him to be happy, healthy and successful. I am so tired of fighting for everything for him to be able to achieve that. It is exhausting and draining. I am starting to lose hope and ambition. I am not giving up. I will not giving up. But my body is warning me now that it is going to crash again if I don't do something. I'm in therapy, I tried medication, I get a lot of me time, I have found joy and satisfaction within cleaning my home, we are able to pay our bills and feed our family, our cars are healthy, we can get from point a to point b, we are able to smile and laugh.
But misery and pain can be so overpowering.
-Tylers Mommy
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