Wednesday, March 30, 2011
Meltdowns
The meltdowns take it out of me. I wish that I knew how to put a stop to them. I wish that I knew how to stop them and handle them better. I wish that C didn't have to witness them. Today he melted down after I asked him to make his lunch for tomorrow. He cried, screamed, ranted, and raged for about 20 minutes in his room. I simply think that the day had been a lot for him. He kept saying that he had been trying very hard to be good for me all day long. I think that in itself is hard for him, so when he gets home, he can blow up. I had a great meeting with his teacher today, and have some questions to ask the therapist.
Therapy
My MIL and I talked yesterday about how beneficial therapy is, and how she wishes more people would get involved in it. I agree. I think it would be awesome if more people could have that person to just talk to, let things out with, and learn tools from. I could use major stress management tools.
J had a therapy session last night. Hubs and I decided that he would do some one on one time. The other times that we have gone, we have all gone in as a family. Little Bro has been a major attention and discipline issue the whole time, and it feeds into J's behavior. So, after a few times of this, we decided that she needed to spend some time just learning about J. J was okay with it. So, he went back with L. C and I (after he got done whining) sat and read a book during this time.
It was a very good move. The therapist was able to work on several concepts with him. They worked on tracking. J does not track with his eyes. He tracks with his whole body, if he tracks at all. He struggles to look people in the eye anyway, so to follow their movement with his eyes is nearly impossible. He moves his whole body. He also doesn't track when doing things like throwing or catching a ball. They worked on that, and we were given some tips for working on that at home.
They also continue to work on social norms. J just doesn't "get" any social cues or rules that other kids are learning by now. He doesn't catch looks, doesn't understand most facial expressions, and is pretty clueless when it comes to "proper" behaviors. The therapist is working on the basics of learning those.
They also worked on friends, what friends are (he couldn't tell her) and how to level people. For example, if it is someone that just says hi to you in passing, then they aren't a best friend, and so on.
They worked on competing norms. How the rules of sports apply and sportsmanlike behavior. How it isn't the end of the world if you are the goalie and someone scores a goal on you, or if you miss a goal.
They talked about anger, and how to handle it appropriately. They talk about this a lot, and I am hoping that this will help with the meltdowns. I have begun to notice that Walmart is just too much stimulation. Every time we go in, it results in a huge meltdown in the middle of the store.
The therapist says that he has a lot to work on, and really, he does. I feel frustrated, because I think about how far along he could be if someone had listened to us in the first place. But, I will deal with it, because that's all that I can do. I know that we can work on these things at home too.
I saw a beautiful quote on the tv at the therapist's office yesterday. The girl in the movie Soul Surfer said, "I don't need EASY. I just need POSSIBLE." Hubs and I feel that way
I will also leave you with a funny. While driving to get J yesterday from a program, C says, "Mom, should I tell the therapist that she has the bad word at the end of her name?" Let me tell you folks, it took me a while to get that, even longer to quit laughing, and a long time to explain to him how that worked. LOL!
J had a therapy session last night. Hubs and I decided that he would do some one on one time. The other times that we have gone, we have all gone in as a family. Little Bro has been a major attention and discipline issue the whole time, and it feeds into J's behavior. So, after a few times of this, we decided that she needed to spend some time just learning about J. J was okay with it. So, he went back with L. C and I (after he got done whining) sat and read a book during this time.
It was a very good move. The therapist was able to work on several concepts with him. They worked on tracking. J does not track with his eyes. He tracks with his whole body, if he tracks at all. He struggles to look people in the eye anyway, so to follow their movement with his eyes is nearly impossible. He moves his whole body. He also doesn't track when doing things like throwing or catching a ball. They worked on that, and we were given some tips for working on that at home.
They also continue to work on social norms. J just doesn't "get" any social cues or rules that other kids are learning by now. He doesn't catch looks, doesn't understand most facial expressions, and is pretty clueless when it comes to "proper" behaviors. The therapist is working on the basics of learning those.
They also worked on friends, what friends are (he couldn't tell her) and how to level people. For example, if it is someone that just says hi to you in passing, then they aren't a best friend, and so on.
They worked on competing norms. How the rules of sports apply and sportsmanlike behavior. How it isn't the end of the world if you are the goalie and someone scores a goal on you, or if you miss a goal.
They talked about anger, and how to handle it appropriately. They talk about this a lot, and I am hoping that this will help with the meltdowns. I have begun to notice that Walmart is just too much stimulation. Every time we go in, it results in a huge meltdown in the middle of the store.
The therapist says that he has a lot to work on, and really, he does. I feel frustrated, because I think about how far along he could be if someone had listened to us in the first place. But, I will deal with it, because that's all that I can do. I know that we can work on these things at home too.
I saw a beautiful quote on the tv at the therapist's office yesterday. The girl in the movie Soul Surfer said, "I don't need EASY. I just need POSSIBLE." Hubs and I feel that way
I will also leave you with a funny. While driving to get J yesterday from a program, C says, "Mom, should I tell the therapist that she has the bad word at the end of her name?" Let me tell you folks, it took me a while to get that, even longer to quit laughing, and a long time to explain to him how that worked. LOL!
Monday, March 28, 2011
A new routine
The Hubs and I have decided to go a different route with J. To make mornings easier, we've decided to use more of the evening to accomplish the next morning's tasks. We are also going to work VERY hard to not let anything break our routine. So, this evening Hubs went to do chores, and the boyos and I came home. With no tv or radio or anything to be distracting, we quietly did homework, got showers taken, clothes picked out for tomorrow, and lunches fixed for tomorrow. Then, the boys ate dinner and went to bed. Yes, I said they went to bed. By 6 pm. J doesn't sleep at all, so I know that he won't sleep, but at least he will be having some down time. The youngest one however, will sleep and I know that he needs a few extra hours. I am hoping that by doing all these things in the evening, we can keep down the huge amount of fussing and fighting that they do in the morning.
I think that it is important too, that we get a routine down and we keep it. It seems like the older that the boys get the harder it is to maintain that routine. But with J, it just doesn't work to break it. One later night spent out grocery shopping or doing anything throws him off for days. If we do have to break the routine, then I need to work harder to get those things done in the evenings before I go to bed.
I am ready for all the fuss to be over with. This move is driving me crazy, partially because I know it's so hard on J. The man who bought the place has been so sweet and kind. I am so grateful for his patience with us in this. I am also grateful that we will be near an extra set or two of hands. I think that it will be not only us helping MIL and FIL but them helping us as well. To be able to just go outside and do the chores while the boys are working on homework, or settled in for the night is going to be so amazing. It will be just so much less hassle. On those days when they are staying at home, for one of them to be able to just come over to the house instead of getting them up at the crack of dawn, would be amazing. It's good to know that we will have someone to depend on, I don't know what we would do without them.
I called the new doc today. I had to do a questionnaire, and the doc had to read it over, and he will approve us or not. I am a nervous wreck. If he even can help J, I have to get past the approval process first, which I never dreamed of. So, I will update on that and see how it goes.
I think that it is important too, that we get a routine down and we keep it. It seems like the older that the boys get the harder it is to maintain that routine. But with J, it just doesn't work to break it. One later night spent out grocery shopping or doing anything throws him off for days. If we do have to break the routine, then I need to work harder to get those things done in the evenings before I go to bed.
I am ready for all the fuss to be over with. This move is driving me crazy, partially because I know it's so hard on J. The man who bought the place has been so sweet and kind. I am so grateful for his patience with us in this. I am also grateful that we will be near an extra set or two of hands. I think that it will be not only us helping MIL and FIL but them helping us as well. To be able to just go outside and do the chores while the boys are working on homework, or settled in for the night is going to be so amazing. It will be just so much less hassle. On those days when they are staying at home, for one of them to be able to just come over to the house instead of getting them up at the crack of dawn, would be amazing. It's good to know that we will have someone to depend on, I don't know what we would do without them.
I called the new doc today. I had to do a questionnaire, and the doc had to read it over, and he will approve us or not. I am a nervous wreck. If he even can help J, I have to get past the approval process first, which I never dreamed of. So, I will update on that and see how it goes.
Saturday, March 26, 2011
April
April is Autism Awareness Month.
Help us light the White House Blue this April the 2nd.
Light the White House Blue
Let your voice be heard. Help our children. Help my J.
Thank you to another friend of mine who gave me a blue light bulb. My house will be lit up blue during the month of April. I plan to order more light bulbs, and I will also be purchasing a pin to wear every day during the month of April. If you are interested in a pin, let me know, I will order more.
Help us light the White House Blue this April the 2nd.
Light the White House Blue
Let your voice be heard. Help our children. Help my J.
Thank you to another friend of mine who gave me a blue light bulb. My house will be lit up blue during the month of April. I plan to order more light bulbs, and I will also be purchasing a pin to wear every day during the month of April. If you are interested in a pin, let me know, I will order more.
Saturday, March 19, 2011
Ah HA!
It is amazing those things that come up now that I go, "ah HA!" THAT'S why J does that!
J has a tremendously weird sense of smell. The child can smell something that no other human being on this planet should be able to smell. It usually drives me absolutely crazy, because usually he's complaining about something that smells.
He fixates on odd things to worry about. Today, it was storming a lot, and he got very worried that the electricity would go out. He became fixated on it, searching the house for a flashlight that he could hold in case the lights went out. Of course, wouldn't you know it, we couldn't find one anywhere.
So, as he paced the floor, wondering where our flashlights were, I looked over and saw a candle on the coffee table. Eureka! I asked him if I lit a candle, would that calm him down? I explained that if I lit it, then if the lights went off, something would be already on. He said it would. As soon as I lit the candle, he immediately calmed down and went on about his afternoon. I never heard another word about it.
J has a tremendously weird sense of smell. The child can smell something that no other human being on this planet should be able to smell. It usually drives me absolutely crazy, because usually he's complaining about something that smells.
He fixates on odd things to worry about. Today, it was storming a lot, and he got very worried that the electricity would go out. He became fixated on it, searching the house for a flashlight that he could hold in case the lights went out. Of course, wouldn't you know it, we couldn't find one anywhere.
So, as he paced the floor, wondering where our flashlights were, I looked over and saw a candle on the coffee table. Eureka! I asked him if I lit a candle, would that calm him down? I explained that if I lit it, then if the lights went off, something would be already on. He said it would. As soon as I lit the candle, he immediately calmed down and went on about his afternoon. I never heard another word about it.
Friday, March 18, 2011
Today
I am extremely frustrated with one of the docs that J goes to. Hubs and I have both discussed it, and feel like he is a doc that has brought us pretty far, but now isn't working for us. I feel like he is severely overworked, but that's not my fault. We have been going to him for some time. The time before last, I took him, and the doc complained at us about how many patients that he had. He told us that next time we would have to come to another clinic that he goes to, and he wanted to know where we went before we began coming to him. I have never complained, and have volunteered to go to every clinic that he goes to. He goes to five that I know of. He really made me feel like I was wasting his time.
There have been multiple times when I have sent Hubs to go with J, thinking that because of culture differences, maybe this doc didn't respect Moms. It seems to have no impact whatsoever. Hubs is just as frustrated with the results.
A typical appointment goes like this. The nurse calls us back. She weighs J, takes us into a room, spends a few minutes taking down whatever we can get her told, and then she sends us back up front. The doc calls us back, (he never remembers J's name, though we've gone to him for SEVERAL years, every few weeks) and he sits and reads what the nurse typed into the computer. He then takes away a med or ups a med, and walks out of the room. Typically, this lasts less than ten minutes.
I am TIRED of feeling like this doctor is doing us a favor by seeing us. My child is not a number. I want to know when we go in that he is doing everything that he can to help him. Yes, the doc is busy. I get that. But, my child is just as important as anything else going on.
He doesn't listen to us. I am tired of it. This last time, Hubs took Jackson in. For years we have been telling the doc that J does NOT sleep. We have tried to get him to help us in some way other than piling on another med, because the meds don't make him sleep. He told us to take him to an ENT and have his tonsils and adenoids checked, and take him to have a sleep study for apnea. Um, ok. Don't get me wrong, I am willing to do whatever tests we need to do to find out what is up with J. But it was a suggestion so FAR out of left field that I couldn't even believe it. I strongly doubt that a tonsil issue is causing J to overpower the meds that he takes at night and stay awake. And if he NEVER goes to sleep how in the world are they going to test him for apnea? I want to figure out what is going on though If the meds aren't helping, I don't want him taking them. And in the end, is it just an autism issue that is never going to be resolved?
I have been talking to J's therapist about this, and the therapist has suggested another doc to try. I am pretty sure that it is something that we are going to have to do, but Lord I am so tired of having to deal with this. Will I end up going to someone who is just as bad? Who knows.
I have learned one thing over the years though. I cannot sit around and just wait. Doctors have let us down time and time again. I have to be proactive at all times. I just wish that there were a manual of things to do. Autism is so different for everyone. No two kids are the same. It is frustrating and heart wrenching.
There have been multiple times when I have sent Hubs to go with J, thinking that because of culture differences, maybe this doc didn't respect Moms. It seems to have no impact whatsoever. Hubs is just as frustrated with the results.
A typical appointment goes like this. The nurse calls us back. She weighs J, takes us into a room, spends a few minutes taking down whatever we can get her told, and then she sends us back up front. The doc calls us back, (he never remembers J's name, though we've gone to him for SEVERAL years, every few weeks) and he sits and reads what the nurse typed into the computer. He then takes away a med or ups a med, and walks out of the room. Typically, this lasts less than ten minutes.
I am TIRED of feeling like this doctor is doing us a favor by seeing us. My child is not a number. I want to know when we go in that he is doing everything that he can to help him. Yes, the doc is busy. I get that. But, my child is just as important as anything else going on.
He doesn't listen to us. I am tired of it. This last time, Hubs took Jackson in. For years we have been telling the doc that J does NOT sleep. We have tried to get him to help us in some way other than piling on another med, because the meds don't make him sleep. He told us to take him to an ENT and have his tonsils and adenoids checked, and take him to have a sleep study for apnea. Um, ok. Don't get me wrong, I am willing to do whatever tests we need to do to find out what is up with J. But it was a suggestion so FAR out of left field that I couldn't even believe it. I strongly doubt that a tonsil issue is causing J to overpower the meds that he takes at night and stay awake. And if he NEVER goes to sleep how in the world are they going to test him for apnea? I want to figure out what is going on though If the meds aren't helping, I don't want him taking them. And in the end, is it just an autism issue that is never going to be resolved?
I have been talking to J's therapist about this, and the therapist has suggested another doc to try. I am pretty sure that it is something that we are going to have to do, but Lord I am so tired of having to deal with this. Will I end up going to someone who is just as bad? Who knows.
I have learned one thing over the years though. I cannot sit around and just wait. Doctors have let us down time and time again. I have to be proactive at all times. I just wish that there were a manual of things to do. Autism is so different for everyone. No two kids are the same. It is frustrating and heart wrenching.
Wednesday, March 16, 2011
Autism
It's such a small word for such a huge diagnosis. I read a quote today from Aaron Likens that said, "If you've met one person with Autism, you've met ONE person with autism." How true. My J is like no one else in the world.
He's sweet.
He's kind.
He loves to read.
He loves to yo yo.
He is obsessed, literally, with all things electronic.
He feels safer lying under things.
He stays up all night most nights.
He is more than a word-Autism.
He is more than his diagnosis.
I am going to use this blog to vent, talk, gather research, and just do what I do. There are days that I need to celebrate, and there are days that I need to cry out to God.
Right now I am completely overwhelmed with the information that is out there. This place will help me organize it. On this journey, I hope that you and I can both learn together. Laugh together. Cry together.
He is more than just his diagnosis. He is my son.
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