I need to dump some thoughts. My husband thinks one day I could write a book.
My son can be so sweet. Last Wed. or Th. while I was outside working on our patio he decided all on his own to make me a surprise. He made a "healthy snack with all my faves". He cut up a peach, apples and grapes arranged them in a bowl and dumped yogurt on top and he cut up some cucumbers, onion and baby carrots and arranged them in a bowl and put some dressing on top. He used the baby carrots and onions to spell LOVE. So sweet and so painfully well done. You could tell he wanted it to be just perfect. He came out to get me and show me and when I went in my first reaction was anger (as he had just cut up $10 worth of food with a knife that I now had to consume before it turned brown), but I held back just enough, then tears (why was I mad? This was my sweet child trying to come out and reach out to me all by himself), then finally a smile, a hug and a great deal of praise for the thoughtfullness. I broke my ever-strict diet and pigged out on some fruits and yogurt with him. It was good -- who new purple grapes and boston cream pie yogurt would taste so good -- maybe because my kid made it with a special ingrediant of selflessness, thoughtfulness and a lot of love. I did end up having to tell him to please ask before he creates in the kitchen, but I covered it up with lots of compliments and praise. I cherish these things and will probably use the grapes and yogurt thing at lots of family gatherings and I promise to give all the credit to the boy.
Last week was not good for the boy -- he's been having tons of trouble at school. The week ended with a call from the principal about a bus incident. Seems the older boys on the bus use bad language (and by older I mean the high schoolers -- our son goes to a school for behaviorally challenged that houses K-12). It also seems that our son and his little friend have picked up on it and told the bus driver to "shut the f@#$ up" and "kiss my a@#" and "kiss my boobies". The little boys accused the high schoolers of showing their privates as well. Major issues!!!! To top it all off the little boys concocted some sort of story to get themselves out of trouble and lied to the principal. AAAGH. Friday is supposed to be a happy day. It was my job to get the story from Dylan one more time and report it to the principal. The principal in turn added to my sons IEP that he needed a bus aid or to be on a bus with an aid -- I didn't know wether to let this happen or not. My gut said not to adjust the IEP just in case there was any future implication, but I went ahead and said I would. I never found out if the story I got was different from the story she got but he was assigned to a different bus by Monday afternoon. Interestingly enought ever since he changed buses he's not had as bad of days at school.
Tuesday was a nightmare!!! The therapists data sheet that we fill out daily was full front and back -- I actually thought I'd have to have 2. Terrible day at school but not as bad as last week, homework was a nightmare (I've been trying to have him do 1 problem per night since they really don't assign homework at this school, to get into the habit), soccer practice was an all out terror and the rest was bad too. Soccer practice is my real vent issue here. We have an agreement with the coach (who's a teacher) that if she needs us to assist with our son to wave us onto the field as we will always be at practices and games. She has utilized this with us. This evening our son was particularly nasty to a girl on the team. She took his ball from him (not in a bad "give it to me" way just in a "it's closer to me" kind of way) and he pushed her down and kicked her. I nearly jumped from the bleachers with anger, embarassment, humility, etc. I asked my husband -- do we need to get him? He said no the coach is to handle it and if she can't she'll get us. Our sons attitude continued, I sank further into the stand and the lump in my throat was the size of a grapefruit. I just felt like we should do something, but I was trying to hold steadfast and let my husband lead the family, as is the natural order per God. He seemed confident that the coach was handling it OK. Then our son spit on the same girl and the coach came to get my husband and he went willingly, dragged our son off the field, sat him down by the goal and proceeded to talk (I think he yelled mostly) to him about his behavior. Our son never went back into practice as he never regained composure all the while needing to be restrained. After practice we told him he would have to apologize to the girl -- well he couldn't understand why. His thought was that she started it because she took the ball. We explained the obvious -- irregardless of her taking the ball you were wrong to push, kick and spit on her. Our son just didn't get that he was in the wrong. Oh my, if we can't figure out a way to get this kid to understand he's going to end up in prison! He truly doesn't get that even though she may have been wrong for taking the ball that he was not entitled to hurt her. This is a trend I'm seeing more and more as he gets older. Just the other day he'd said something similar. Anyway, the girl had left before we got him calm so we couldn't make amends. My husband railed our son all the way home and our son was screaming at the top of his lungs all the way home, at home the railing continued. I could tell my husband was just trying to get it into our sons head and our son could not understand it. All the while I'm letting the railing go on praying that when I need to speak I will know God will tell me when it's time. I finally got the word to speak. I calmly (yah for me -- calm is the last thing I was and yah God for helping me be calm) stated "it's simple son if you do the right thing you won't be in trouble, we are here to guide you and help you learn what's right and if you have any question you can ask before you act". I explained what he did was wrong one last time and turned out the lights as his punishment was to go to bed when we got home with no story and no snack, no TV, no radio, no nothing his toys were even taken away. There's a lot more I could say here, but my main point is we are desperataly trying to do the right thing and teach what is right, but for some reason our son is not getting it and I can't figure out why.
Wednesday afternoon I received a phone call from parks and rec. Let me just say I only answerred the phone because I thought it was the school. I'm very, very sorry I answered it. He was calling to tell me the coach had filed a complaint about the incidents last night and that we needed to be there to discipline and teach our child right from wrong. He approached this in much the wrong way but judging us to be unconcerned unattentive parents who do just drop our kids at practice so someone else can watch them. His judgement of us was what pissed me off. We have done and are still doing everything in our power to teach this child right from wrong. I have been to hell and back and back to hell again. I explained Dylan's condition and that we had told the coach and if she needs us we are in the stands and will be happy to assist if she cannot handle him all she has to do is come and get us and that she has done this when she's needed to. He continued his judgemental rant and proceeded to tell me what I already knew that what happened was unacceptable, etc. Duh! I explained that I do not condone what happen at all and that our son did receive punishment and necessary explanation. I am still livid about the call. And it is so not about the reason -- I fully expected someone to call -- it was the way he approached it by judging and blaming. He has not a clue about our life or what goes on in our home. He made me feel like trash. After I told my husband he too was angry. I refrained from calling the coach as I new that it would only lead to an embarassing angry outburst that would further worsen our situation. Anyway, the guy told us if it happen again our son would be removed from the program. Fine with me. My husband and I talked at length about what we should discuss with the assistant coach at the game tomorrow and decided that we would stay next to Dylan on the field much the same as our therapist did last session and sit him down or out when things begin to go south.
This evening my husband remained as close to our son as he could on the sideline during the game and tried to talk with the assistant coach before the game but was the guy was somewhat rude to him and obviously not in the mood to discuss. After the game we had a talk with the assistant coach who happens to be a police officer. Let me just say this guy is wound up tighter than an 8 day clock and was very short, rude and took the attitude of "I have no use for you" because I've already judged you as junk. His son is autistic as well so he could understand the bahavior, but his son never has any trouble at school or in sports -- my response to this was "how nice for you" then you get it but you don't because our son is fine at home and acts out mainly in public and at school because that's where he is anxious. His kid is maybe anxious at home and not at school and in public -- I don't know. We explained what we talked with the head coach about (she was gone tonight) and that if that wasn't cool we wished she could have talked with us first, we also explained that our son was disciplined for the actions and that parks and rec handled there end of the deal very disrespectful and judgemental toward us. His response was that he's a cop and that was a libability and to protect the parks and rec they had to report it -- basically he passed the liability to us. He also stated that he was only coaching because they had no one else and he didn't want to because he has kids of his own and doesn't want to spend his time babysitting everyone elses kids and would gladly give up the position if someone would take it. He also stated that the coach keeps him away from our son and the other children. Which answers my question as to why the guy is always standing beside the goal instead of with the kids. So while all this nonsense was being spouted and getting nowhere I told him what we were doing last year and if he thought that would be ok to try -- he agreed. Then head coaches husband and the parks and rec guy came over and we had to start all over again. I did tell the parks and rec guy that I didn't appreciate his judgement, but that I agree with the severity of the incident. The head coaches husband was a bit more personable and agreed to pass the info on to his wife. AAAAAAAAAAAAAAGGGHHHH! The funny thing is -- the girl that our son was aggressive towards last week was playing with him before the game and they were both playing together very nicely like nothing ever happened. Is that the lesson here, the big picture? I could tell my husband was livid as was I, and we discussed it further when we got home and came to the conclusion that we'll try it and if it doesn't work why then our son will just watch the rest of this session from the sidelines. The assistant coach seemed to not want us to come back in our opinion, but had to give us another chance. I pray next Tuesday at practice we will be led by grace to do what we need to do that is the best for our son and the safety of the other players without distrupting anyones fun or making a scene -- not what others think we should do, but what will help our son understand right and wrong. I also send out prayers to the coaches for the patience, wisdom and perserverence to teach these kids, but to also allow them to have fun while learning because none of them look like they're having too much fun. Matter of fact I've heard a few complaints from the kiddo's via their parents.
I'm sure there is much more to add, but the purpose is to get it off my chest so I can sleep.
Thursday, September 17, 2009
Wednesday, September 9, 2009
9/9/09 Thoughts
What a great date. I can hardly wait till 10/10/10 just to see what awesome movie or whatever will be released.
Oh I must blog about school. The first week was great -- "Student of the Week" even -- I was so impressed. We cheered about it and praised him for it! He was proud of himself too which was so encouraging.
The second week good. We praised him for that as well. He even had homework a couple days. The first time he complained and tantrumed but got it done within 1/2 hour (unlike the usual 3 to 4 hours). The second night he brought it home he immediately completed it without any trouble. Oh boy what a treat and oh boy did he get priase for it. He earns tickets at school every week for good/positive/respectful behavior and this week he brought me home something -- what a thoughtful boy!
The 3rd week not so good and so on down the hill. I'm just at my whits end about how to help him understand common respect and social interaction. He's been his usual aggressive self with a whole lot of bad attitude and back talk thrown in. The other day he had an assignment to write "Why the Pledge of Allegiance is Important". He wrote something like "It's dum, my school is horrible and my teacher is mean. Love, ...." Wow -- even I was shocked at this. He also told the teacher that he didn't have to redo it because his mom wouldn't do anything about it anyway. Ha! He knows better than that he was just testing her. If anything is for sure it's that if he has homework it's to be done before any other reinforcing activity starts. So we did the homework and I added a little extra assignment which was to write 5 ways I can show respect to my teacher. He didn't know and basically wrote what I told him about how I would show respect to my teacher, but he did it. I'm also concerned that he is regressing back to far in his schoolwork -- he is transposing b's and d's again and not sounding out or spelling easy words well. I'll give this a couple more weeks, but it's on the radar.
Much to my surprise we have been awarded a partial scholar ship to the Autism Treatment Center of America. I am so jazzed. We have been wanting to do this program since a seminar we went to in June. With so many things implemented and unsuccessful it's hard to be too excited, but I have to tell you the little bit we got from the seminar worked positively immediately -- none of this "it will get worse before it gets better".
We do our best to teach him, but he just does not get it. I know it's hard for others to grasp -- shoot it's still hard for me to grasp, but he just does not tick the way "normal" folks do. We've tried this way and that way and every other way we could think of or our therapists could think of to no or little avail. I'm not even sure how to explain it, but his perspective is backwards kind of like his pain threshold -- if cut severely he won't even hardly notice but if gently nudged he will scream bloody murder.
I have great hope that this program will help us from and completely different and positive perspective (that's what I got from the seminar and all the references I've check anyway). It would be nice to have a relationship with him and bond with him on a larger level.
I have put all this going to the Autism Treatment Center in God's hands as if it is supposed to happen He will make sure it does. The hardest thing is humbling myself enough to ask for financial help. Oh, I hate it, but I feel it's OK this time. I think this might be the only time I've ever asked for financial help from anyone other than my parents and I think I've only asked them a few times. I'm also anxious about leaving for a week alone to a strange place, but am hopeful they have a spa or something relaxing to do in the evening as the time to destress is much overdo. It would be nice to come home recharged, full of information and ready to make lasting, impactful changes.
These blogs are starting to sound like I'm constantly complaining about my son. It's not my intention to only report the bad things, but it is my intention to use this blog to get them off my chest so I hope not to depress anyone who may read it, but it's a bit of therapy for dear old mom.
Oh I must blog about school. The first week was great -- "Student of the Week" even -- I was so impressed. We cheered about it and praised him for it! He was proud of himself too which was so encouraging.
The second week good. We praised him for that as well. He even had homework a couple days. The first time he complained and tantrumed but got it done within 1/2 hour (unlike the usual 3 to 4 hours). The second night he brought it home he immediately completed it without any trouble. Oh boy what a treat and oh boy did he get priase for it. He earns tickets at school every week for good/positive/respectful behavior and this week he brought me home something -- what a thoughtful boy!
The 3rd week not so good and so on down the hill. I'm just at my whits end about how to help him understand common respect and social interaction. He's been his usual aggressive self with a whole lot of bad attitude and back talk thrown in. The other day he had an assignment to write "Why the Pledge of Allegiance is Important". He wrote something like "It's dum, my school is horrible and my teacher is mean. Love, ...." Wow -- even I was shocked at this. He also told the teacher that he didn't have to redo it because his mom wouldn't do anything about it anyway. Ha! He knows better than that he was just testing her. If anything is for sure it's that if he has homework it's to be done before any other reinforcing activity starts. So we did the homework and I added a little extra assignment which was to write 5 ways I can show respect to my teacher. He didn't know and basically wrote what I told him about how I would show respect to my teacher, but he did it. I'm also concerned that he is regressing back to far in his schoolwork -- he is transposing b's and d's again and not sounding out or spelling easy words well. I'll give this a couple more weeks, but it's on the radar.
Much to my surprise we have been awarded a partial scholar ship to the Autism Treatment Center of America. I am so jazzed. We have been wanting to do this program since a seminar we went to in June. With so many things implemented and unsuccessful it's hard to be too excited, but I have to tell you the little bit we got from the seminar worked positively immediately -- none of this "it will get worse before it gets better".
We do our best to teach him, but he just does not get it. I know it's hard for others to grasp -- shoot it's still hard for me to grasp, but he just does not tick the way "normal" folks do. We've tried this way and that way and every other way we could think of or our therapists could think of to no or little avail. I'm not even sure how to explain it, but his perspective is backwards kind of like his pain threshold -- if cut severely he won't even hardly notice but if gently nudged he will scream bloody murder.
I have great hope that this program will help us from and completely different and positive perspective (that's what I got from the seminar and all the references I've check anyway). It would be nice to have a relationship with him and bond with him on a larger level.
I have put all this going to the Autism Treatment Center in God's hands as if it is supposed to happen He will make sure it does. The hardest thing is humbling myself enough to ask for financial help. Oh, I hate it, but I feel it's OK this time. I think this might be the only time I've ever asked for financial help from anyone other than my parents and I think I've only asked them a few times. I'm also anxious about leaving for a week alone to a strange place, but am hopeful they have a spa or something relaxing to do in the evening as the time to destress is much overdo. It would be nice to come home recharged, full of information and ready to make lasting, impactful changes.
These blogs are starting to sound like I'm constantly complaining about my son. It's not my intention to only report the bad things, but it is my intention to use this blog to get them off my chest so I hope not to depress anyone who may read it, but it's a bit of therapy for dear old mom.
Thursday, August 20, 2009
8/20/09 Thought
Ever have one of those moments when you wish you could take it all back and start over? I did tonight. My son had a play date and became very ungrateful when the play date was over. We asked him to clean up the minimal mess they had made and the fight was on -- back talk, screaming, you name it. I took this as him being ungrateful and disrespectful, as I was willing to give up over 4 hours of my day so he could have a buddy over. I wish I knew how to deal with these situations better. I let my hurt get in the way of what is right. I have a hard time dealing with the fact that my son does not understand me, nor does he want to hear what I have to say when I try to calmly explain. I really still after all this have a hard time believing that he really has Asperger's syndrome and sees things from a different perspective not to mention from the perspective of a child.
Oh, the guilt and regret that I feel is so painful. It wells up in my throat and numbs my mind. I give it to God, but I always take it back. So, I pray for wisdom, patience, joy, slow to anger, pease, you know all the fruits of the spirit and He is showing me these things and growing me in these areas I guess just not fast enough for me. I do trust that He is in control and knows what is best for all of us and one day we will know the reasons for the hurtful lessons of life.
Lately I am relying on one of his greatest promises -- "Joy comes in the morning!"
Oh, the guilt and regret that I feel is so painful. It wells up in my throat and numbs my mind. I give it to God, but I always take it back. So, I pray for wisdom, patience, joy, slow to anger, pease, you know all the fruits of the spirit and He is showing me these things and growing me in these areas I guess just not fast enough for me. I do trust that He is in control and knows what is best for all of us and one day we will know the reasons for the hurtful lessons of life.
Lately I am relying on one of his greatest promises -- "Joy comes in the morning!"
Monday, August 17, 2009
8/17/09 Thoughts -- Catching Up
Wow, I haven't blogged for a while. I've actually come up with several topics I wanted to get off my chest but have forgotten most of them now.
The Demo Derby at the Tongie Fair
Well on Saturday, 8/15/09, I awoke with a crazy idea. How about we all go to the Demolition Derby. I've always wanted to take my son, but it just seems we're always doing something else or forget that the fair is in town. This year we went!! We decided to make it a surprise for our son. So, about an hour before we left I fed him a good, "stick to your ribs" dinner and told him to change so we could get going. (He's had a thing about clothes and changing, etc., so we had a huge ordeal over that -- "Why?", "I don't like that!", "I hate you", "I hate my clothes", blah, blah, blah). It began to rain on our way, and I was tempted to throw in the towel especially after the tantrum about the clothes, but I did not -- I was determined to have fun for a change. When we got to the fairgrounds it was raining hard so we sat in the car for a while (our son still did not know why we were there).
Finally, we get out and walk toward the fair and we tell him why we are there -- he's a bit excited. The real excitement came when we walked past the pits. We walked all around the fenced in pit area, but since hubby hasn't worked for 2 weeks decided we couldn't afford to go in. Our son couldn't understand this at all and kept demanding access to the pits at $15 a piece.
To redirect perseveration, kill some time and get out of the rain, we mozied to the animal barns where our son held his nose the entire time and complained endlessly even though he was enjoying it. (Why must the child always complain and demand? It is so tiresome). I think the chickens were his fave -- oh wait -- it was the pooping cow that got him interested.
Finally it was time to get in live and buy our tickets!!! We had to wait for quite a while, but it was worth it. As the cars rolled into the derby a tear came to my eye -- I don't know if it was the rumbling of the engines or being back in my hometown or what, but I was so overcome with joy. I know that sounds so crazy and redneck, but it happened. Then the countdown and the crashing!!! I was elated and my son was too!!!!!!! Finally, something we both could get excited about and relate to! Oh how long I've waited for a connection something that just the two of us could share. We chatted back and forth the entire derby about the cars and why and look at that and cheering at the cool crashes. Oh, it felt so good to connect even for that short amount of time. I never want to forget that feeling. I did have to endure the "I want's" all evening and explain they "why you can'ts", but it was worth it. He chattered endlessly all through the race and all the way home. My husband was irritated at us, but he endured it thankfully.
I guess the point to this story, not only to document it for my memory, but to say that when you think all is lost God will throw something that seems utterly meaningless into our laps and make it precious and powerful. Thank you Lord.
Gratefullness or Lack Thereoff
Our son seems to be falling into a state of ungratefullness (which I could also call bratty and spoiled). He seems to think he is owed certain things even though he has not done anything to earn or deserve them. This all started with school shopping -- we decided to let him pick his clothes since he's become very picky about them lately. We figured if he picked them he'd wear them. We explained in advance that we had a budget since daddy is laid off and he'd have choices from what he picked. Mistake -- he, of course, wanted them all and couldn't leave the store wihout all of them. Then on to another store, more of the same. Then shoe shopping, more of the same, except he wanted steel toed boots instead of tennis shoes which we explained was not possible. Well then he didn't want any shoes at all. Scream, cuss, yell -- silently, of course. Then he "wanted" to go out to eat, to get ice cream, to get another shirt, etc. He "I wanted" us to death -- I mean really to death. When we got home I sat on the couch until it was time for bed that's how worn out I was. The thing that sticks to me the most is that he never said thank you for what he got or even that he got it cause we really didn't have the money. When I got to thinking about it he's been doing that all summer long. The moral to this story is to give it to God quickly and not let things fester.
However, I did and am letting it fester still even today. No thank you's for the special Sunday breakfast, the zoo, coco key, the pool, oceans of fun, the demo derby, for not beating him to death for saying "I want" 10,000 times, the "this", the "that". I don't know how this started -- he's really always been polite and we always (well almost always) thank him and each other for things.
I often wonder if it's because they don't make the kids say "sorry" or "thank you" at school. Yes, when a child hits, bullies, smarts off or does anything wrong they are not required to own up to it and apologize for it. This makes no sense to me -- if I ever figure out the logic behind this I'll be sure to document it. The other thing I wonder is that sense of entitlement a trait of autism or asperger's, just modern society, too much Disney channel, or have we really spoiled him that much? I don't feel like he's spoiled. When I see other kids and what they have and get I feel like our son is actually deprived.
We are not real sure what to do about this other than continueing to set an example and cueing him, but I need to get it out of my head so I can move on.
The Demo Derby at the Tongie Fair
Well on Saturday, 8/15/09, I awoke with a crazy idea. How about we all go to the Demolition Derby. I've always wanted to take my son, but it just seems we're always doing something else or forget that the fair is in town. This year we went!! We decided to make it a surprise for our son. So, about an hour before we left I fed him a good, "stick to your ribs" dinner and told him to change so we could get going. (He's had a thing about clothes and changing, etc., so we had a huge ordeal over that -- "Why?", "I don't like that!", "I hate you", "I hate my clothes", blah, blah, blah). It began to rain on our way, and I was tempted to throw in the towel especially after the tantrum about the clothes, but I did not -- I was determined to have fun for a change. When we got to the fairgrounds it was raining hard so we sat in the car for a while (our son still did not know why we were there).
Finally, we get out and walk toward the fair and we tell him why we are there -- he's a bit excited. The real excitement came when we walked past the pits. We walked all around the fenced in pit area, but since hubby hasn't worked for 2 weeks decided we couldn't afford to go in. Our son couldn't understand this at all and kept demanding access to the pits at $15 a piece.
To redirect perseveration, kill some time and get out of the rain, we mozied to the animal barns where our son held his nose the entire time and complained endlessly even though he was enjoying it. (Why must the child always complain and demand? It is so tiresome). I think the chickens were his fave -- oh wait -- it was the pooping cow that got him interested.
Finally it was time to get in live and buy our tickets!!! We had to wait for quite a while, but it was worth it. As the cars rolled into the derby a tear came to my eye -- I don't know if it was the rumbling of the engines or being back in my hometown or what, but I was so overcome with joy. I know that sounds so crazy and redneck, but it happened. Then the countdown and the crashing!!! I was elated and my son was too!!!!!!! Finally, something we both could get excited about and relate to! Oh how long I've waited for a connection something that just the two of us could share. We chatted back and forth the entire derby about the cars and why and look at that and cheering at the cool crashes. Oh, it felt so good to connect even for that short amount of time. I never want to forget that feeling. I did have to endure the "I want's" all evening and explain they "why you can'ts", but it was worth it. He chattered endlessly all through the race and all the way home. My husband was irritated at us, but he endured it thankfully.
I guess the point to this story, not only to document it for my memory, but to say that when you think all is lost God will throw something that seems utterly meaningless into our laps and make it precious and powerful. Thank you Lord.
Gratefullness or Lack Thereoff
Our son seems to be falling into a state of ungratefullness (which I could also call bratty and spoiled). He seems to think he is owed certain things even though he has not done anything to earn or deserve them. This all started with school shopping -- we decided to let him pick his clothes since he's become very picky about them lately. We figured if he picked them he'd wear them. We explained in advance that we had a budget since daddy is laid off and he'd have choices from what he picked. Mistake -- he, of course, wanted them all and couldn't leave the store wihout all of them. Then on to another store, more of the same. Then shoe shopping, more of the same, except he wanted steel toed boots instead of tennis shoes which we explained was not possible. Well then he didn't want any shoes at all. Scream, cuss, yell -- silently, of course. Then he "wanted" to go out to eat, to get ice cream, to get another shirt, etc. He "I wanted" us to death -- I mean really to death. When we got home I sat on the couch until it was time for bed that's how worn out I was. The thing that sticks to me the most is that he never said thank you for what he got or even that he got it cause we really didn't have the money. When I got to thinking about it he's been doing that all summer long. The moral to this story is to give it to God quickly and not let things fester.
However, I did and am letting it fester still even today. No thank you's for the special Sunday breakfast, the zoo, coco key, the pool, oceans of fun, the demo derby, for not beating him to death for saying "I want" 10,000 times, the "this", the "that". I don't know how this started -- he's really always been polite and we always (well almost always) thank him and each other for things.
I often wonder if it's because they don't make the kids say "sorry" or "thank you" at school. Yes, when a child hits, bullies, smarts off or does anything wrong they are not required to own up to it and apologize for it. This makes no sense to me -- if I ever figure out the logic behind this I'll be sure to document it. The other thing I wonder is that sense of entitlement a trait of autism or asperger's, just modern society, too much Disney channel, or have we really spoiled him that much? I don't feel like he's spoiled. When I see other kids and what they have and get I feel like our son is actually deprived.
We are not real sure what to do about this other than continueing to set an example and cueing him, but I need to get it out of my head so I can move on.
Tuesday, July 28, 2009
7/28/09 Thoughts
Yesterday evening my son had a headache. I took it for what it was and gave him a cold rag and told him that the best thing for a headache was a nap. He woke up from his nap still complaining of a headache (there is a point to all these boring details I promise). I fed him and gave him fluids thinking he may be a bit dehydrated as it was hot. I had given him the last of the Children's Tylenol that morning and not replaced it so I called the nurse line for advice as to weather I could give him 1/2 an Aleve (the answer was no). I then went to check on him and he was complaining of being dizzy so I took his temp -- it was 102.4. Momma freaked a bit inside at that number. I asked him if he felt like he could go to the drug store for meds and he said he could not. He had a cool rag on his head, but I went to get a cool rag for his body and an ice pack. I called his dad and told him to stop and get the meds on his way home.
So, for the hour in between I sat with my child, placing cool rags on his head, holding him and stroking his back while watching him come in and out of sleep. I took his temp about every 15 minutes to see that it did not go up (luckily it went down a bit). While I did this I was touched. I could see my sweet little one and the loving gestures that are so few and far between being genuinly appreciated. Why are these loving gestures so few and far between? The behaviors and the behavior plans get in the way and build resentment, confusion and avoidance. The shaky balance we strive for is so easily tipped to one side and it's hard to get back up once you've been tipped over. I prayed over my child for healing, for God to give us one more chance, because at the time it seemed that after so many dramatic things happening that maybe God was trying to get our attention -- duh. I realized in those moments that if I lost this child I would no longer be able to go on -- I needed to make things right with my child to get back up on the balance beam and walk it. I prayed and cried and cried and prayed. I stared at my child and renewed his beauty in my mind; refreshed his true spirit in my heart (who my child truly is -- not what ASD complicates).
Not long before the meds arrived my son awoke for a moment. I gave him a choice "Would you like mommy to stay with you or leave you alone so you can get some rest?" He chose for me to leave and my heart broke -- he either didn't need me anymore or he didn't want me anymore. I don't know if I ever want to know why he made that choice as the latter would hurt so bad. I complied and left him alone to rest.
I went back to cleaning the kitchen floor and luckily not long after the meds arrived. I gave him his dose and sat with him for a little while and returned to my tasks.
While doing my bible study I was riddled with fear that maybe this fever was an infection caused by the cut he'd gotten on his foot in Omaha so I got back on the phone to the nurse line. She did not think they were related and my mind was put at ease. I think I am gun shy with this kid because every time I think it's nothing it's usually something much bigger than I'd ever dreamed (our son has a way of overreacting to the small things and not reacting at all to the big ones). After this call I was able to go to bed.
Not long after being in bed my husband wakes me up saying Dylan is in his room calling for you and scratching at his bed. I rushed down to him. He was obviously hallucinating and in sheer terror (this has happen before with pain meds and its also happen with prozac). I laid down with him, held him and comforted him until he was calm. Then I asked him if he was going to be OK, took his temp and went back to my bed.
This morning I woke up thanking God that the fever had broken and I still had another chance with my child to make it right. If you can't tell, I still have a ton of guilt and self blame for my sons behaviors.
Today my son was an absolutely wonderful child all day -- very helpful, polite, willing and kind. I am grateful for this day and pray for many more just like it. I wonder if my som realized that mommy really does still care and love him dearly.
I always remember Dr. Phil saying that children need a soft place to fall. And sometimes when dealing with ASD children the soft place is not there enough because we're always worried about dealing with a behavior the right way or on guard for any triggers. In a way his illness last night helped us to relax and not worry about ASD for just the right amount of time.
Thank you for the lesson Lord. And, thank you Lord for making it an easy lesson. I pray that I can take this lesson with me in day-to-day life from now on and leave with you the sadness and self-blame that ASD brings.
One more prayer request. Please keep Dylan safe at the water park tomorrow! We've not had the best of luck this year and he is actually afraid to go after being hurt at 2 this year. Give him good judgement and common sense as he plays and enjoys his day Lord. Thank you. Amen.
So, for the hour in between I sat with my child, placing cool rags on his head, holding him and stroking his back while watching him come in and out of sleep. I took his temp about every 15 minutes to see that it did not go up (luckily it went down a bit). While I did this I was touched. I could see my sweet little one and the loving gestures that are so few and far between being genuinly appreciated. Why are these loving gestures so few and far between? The behaviors and the behavior plans get in the way and build resentment, confusion and avoidance. The shaky balance we strive for is so easily tipped to one side and it's hard to get back up once you've been tipped over. I prayed over my child for healing, for God to give us one more chance, because at the time it seemed that after so many dramatic things happening that maybe God was trying to get our attention -- duh. I realized in those moments that if I lost this child I would no longer be able to go on -- I needed to make things right with my child to get back up on the balance beam and walk it. I prayed and cried and cried and prayed. I stared at my child and renewed his beauty in my mind; refreshed his true spirit in my heart (who my child truly is -- not what ASD complicates).
Not long before the meds arrived my son awoke for a moment. I gave him a choice "Would you like mommy to stay with you or leave you alone so you can get some rest?" He chose for me to leave and my heart broke -- he either didn't need me anymore or he didn't want me anymore. I don't know if I ever want to know why he made that choice as the latter would hurt so bad. I complied and left him alone to rest.
I went back to cleaning the kitchen floor and luckily not long after the meds arrived. I gave him his dose and sat with him for a little while and returned to my tasks.
While doing my bible study I was riddled with fear that maybe this fever was an infection caused by the cut he'd gotten on his foot in Omaha so I got back on the phone to the nurse line. She did not think they were related and my mind was put at ease. I think I am gun shy with this kid because every time I think it's nothing it's usually something much bigger than I'd ever dreamed (our son has a way of overreacting to the small things and not reacting at all to the big ones). After this call I was able to go to bed.
Not long after being in bed my husband wakes me up saying Dylan is in his room calling for you and scratching at his bed. I rushed down to him. He was obviously hallucinating and in sheer terror (this has happen before with pain meds and its also happen with prozac). I laid down with him, held him and comforted him until he was calm. Then I asked him if he was going to be OK, took his temp and went back to my bed.
This morning I woke up thanking God that the fever had broken and I still had another chance with my child to make it right. If you can't tell, I still have a ton of guilt and self blame for my sons behaviors.
Today my son was an absolutely wonderful child all day -- very helpful, polite, willing and kind. I am grateful for this day and pray for many more just like it. I wonder if my som realized that mommy really does still care and love him dearly.
I always remember Dr. Phil saying that children need a soft place to fall. And sometimes when dealing with ASD children the soft place is not there enough because we're always worried about dealing with a behavior the right way or on guard for any triggers. In a way his illness last night helped us to relax and not worry about ASD for just the right amount of time.
Thank you for the lesson Lord. And, thank you Lord for making it an easy lesson. I pray that I can take this lesson with me in day-to-day life from now on and leave with you the sadness and self-blame that ASD brings.
One more prayer request. Please keep Dylan safe at the water park tomorrow! We've not had the best of luck this year and he is actually afraid to go after being hurt at 2 this year. Give him good judgement and common sense as he plays and enjoys his day Lord. Thank you. Amen.
Thursday, July 23, 2009
7/23/09 Thoughts
The week has been a roller coaster. My son has mastered the fine art of back talk. This, according to the therapist, is his new way to get my attention -- it works. You gotta hand it to the kid he's smart. This morning he demanded an omlet. Well, mommy doesn't know how to make an omlet (I am am a little dangerous in the kitchen not to mention I hate cooking) so I offered scrambled or fried, cereal or toast. Still he demanded an omlet. Well, then the boy will go hungry till lunch. After a bit more of his perseverance and disrespect he calmly asked for cereal. Victory is mine!
After talking to a friend today, I "re" realized that I'm not alone in this. My son isn't the only child on the planet that refuses to tie his shoes, properly bathe himself, or has to be reminded every day to do his chores and what his chores are (which by the way are minimal and mostly basic hygene). Every parent of an ASD child needs these gentle reminders every so often. I tend to put the blame on myself and I would guess other parents do as well. And when I'm not putting the blame on me I tend to put it on my husband. In reality it's not our fault. We are doing the best we can and after many a trial and error have realized there is no magic bullet to fix this.
After a meeting today, I am slowly but surely learning the art of creative state funding for therapies. Some folks actually get funding for therapy and don't use it -- and the government allows for this in their budget. While folks who really want to utilize it for good sit on waiting lists for years -- hmm.
We had a boys party last night. I am insane, but the guest list included my son with asperger's, a boy with ADHD and a boy allergic to grass and a "normal" functioning boy. What was I thinking!!! It actually went really well though. I was so proud of my son -- he did so well and had so much fun. And, the fun is really all that matters. A couple of the boys did not get along so well, but luckily before it got to bloody one of the moms arrived.
I am realizing behavior therapists are a rare breed. They actually get excited about tantrums and trigger behaviors -- I find this interesting and to be honest disturbing. I prefer the happy, content, compliant child myself (the grass is always greener on the other side). I am very thankful for our therapist -- she's awesome and is slowly becoming a part of the family and a wonderful friend. They have a hard job but the payoff is huge. Imagine seeing a family come full circle from nearly torn apart to happily functioning or maybe (this is a very hopeful maybe) normal. Boy do I long for the days when I thought everything was OK.
The therapist keeps wanting us to utilize respite care. I am leery to do this for some reason. I see the value in some much needed alone time with my husband, but I have a hard time with letting a strange, yet well trained, man take my son to the park or whatever. I need to pray about this. And, it seems every time we do get a break something comes up that we don't get to spend any time together anyway. Like tonight, grandma took our son for an overnight, and my husband ended up sick and our big plans (which weren't really so big) were squashed a bit. I do however feel a huge weight lifted when our son is gone and it's nice to sleep peacefully and not have to worry about what I am going to do to entertain my son all day or if he's going to tantrum.
After talking to a friend today, I "re" realized that I'm not alone in this. My son isn't the only child on the planet that refuses to tie his shoes, properly bathe himself, or has to be reminded every day to do his chores and what his chores are (which by the way are minimal and mostly basic hygene). Every parent of an ASD child needs these gentle reminders every so often. I tend to put the blame on myself and I would guess other parents do as well. And when I'm not putting the blame on me I tend to put it on my husband. In reality it's not our fault. We are doing the best we can and after many a trial and error have realized there is no magic bullet to fix this.
After a meeting today, I am slowly but surely learning the art of creative state funding for therapies. Some folks actually get funding for therapy and don't use it -- and the government allows for this in their budget. While folks who really want to utilize it for good sit on waiting lists for years -- hmm.
We had a boys party last night. I am insane, but the guest list included my son with asperger's, a boy with ADHD and a boy allergic to grass and a "normal" functioning boy. What was I thinking!!! It actually went really well though. I was so proud of my son -- he did so well and had so much fun. And, the fun is really all that matters. A couple of the boys did not get along so well, but luckily before it got to bloody one of the moms arrived.
I am realizing behavior therapists are a rare breed. They actually get excited about tantrums and trigger behaviors -- I find this interesting and to be honest disturbing. I prefer the happy, content, compliant child myself (the grass is always greener on the other side). I am very thankful for our therapist -- she's awesome and is slowly becoming a part of the family and a wonderful friend. They have a hard job but the payoff is huge. Imagine seeing a family come full circle from nearly torn apart to happily functioning or maybe (this is a very hopeful maybe) normal. Boy do I long for the days when I thought everything was OK.
The therapist keeps wanting us to utilize respite care. I am leery to do this for some reason. I see the value in some much needed alone time with my husband, but I have a hard time with letting a strange, yet well trained, man take my son to the park or whatever. I need to pray about this. And, it seems every time we do get a break something comes up that we don't get to spend any time together anyway. Like tonight, grandma took our son for an overnight, and my husband ended up sick and our big plans (which weren't really so big) were squashed a bit. I do however feel a huge weight lifted when our son is gone and it's nice to sleep peacefully and not have to worry about what I am going to do to entertain my son all day or if he's going to tantrum.
Monday, July 20, 2009
Omaha Zoo/Coco Key Family Weekend
The Omaha Zoo coupled with the Coco Key Waterpark is definately a worthy place to take an active young boy. We were up early and going non-stop except to eat from Friday evening to Sunday afternoon. We were so tired that we skipped the Imax movie thinking that it would be a waste of money -- we all thought we might fall asleep.
We arrived Friday about 7:30 pm and hit the waterpark, then the hotel pool, then off to bed. But, Dylan did not want to sleep. Our first meltdown of the weekend. Dad handled this one -- it was not pretty. I pretended to be asleep (as if anyone in the hotel could sleep through that kind of screaming). What a will that child has.
Unbeknownst to us the former dweller of our hotel room had set the alarm for like 5 am. After laying in bed for another hour trying to fall asleep gave up, got up and took a shower and planned the day. I woke everyone else up at 7 am to get dressed, we went to eat and went to the zoo. It worked out perfectly, we got there right after it opened.
The zoo was pretty empty to start with we saw the Cat's, Bears, the list goes on. It was incredible. The thing that sticks out about Saturday was the gorilla exhibit. This gorilla actually came up to our son, stared him down eye-to-ey for a while, did his King Kong thing and kicked the glass. I don't know what that was about, but I'm hoping it was a show of dominance by the gorilla and I'm hoping our son learned a little something from it -- if nothing else too fear the gorilla. Our son was really not effected by this at all -- I expected a freak out, but thankfully no. We watched some gorillas and monkeys play together -- it was so hilarious.
We rode the sky tram which I thought would be fun. Oh was I wrong -- something about not being enclosed in midair nearly elicited an anxiety attack.
The Desert Dome was awesome (and getting there put an end to the perseverating that had been going on all morning by our son about going to the desert dome). They had authentic sand. We were all entranced by the experience. The nighttime, underground part of the desert dome was equipped with an experience of the senses for us humans, many nocturnal animals, a cave, and a swamp with real crocs (dad's fav). The swamp was by far the creepiest with its music and crickets and the looming danger of crocs under fence.
Then the train ride. I'm sure there was more that we saw Sat., but I have forgotten already.
We left for our hotel and some much deserved dinner. We seemed to have a ton of trouble with our child at mealtime. He acted up at breakfast, lunch and dinner. We finally told him to act as if he were with his grandma while we were eating out -- didn't help but at least we planted the idea.
After dinner we were off to Coco Key Waterpark. I rode the waterslides with my son -- they were fun. There was one that was dark, no lights, can't see what's coming -- you get the idea. My don was scared to death, and don't tell him but so was I. I sucked it up for his benefit though. Then we told dad that he had to go down it -- it was the coolest. You get the idea -- he was not pleased with our small fib. Needless to say we did not visit the dark waterslide again, but we rode the heck out of the light one.
After the waterslide fun wore off my son decided to play somewhere else. So the adults sat in the spa for a while -- about 5 minutes. Then it was off to watch over our pride and joy, i.e., yell at him to stop running (we remember the concussion and ER trip from an Oceans of Fun accident a couple weeks ago, but evidently he did not). Dad had to get onto the boy many times to no avail, but he didn't have it in him to make him leave the park like he had threatened. Dad getting onto the boy spurred the boy to yell back at him and one of the things he said was "Dad, I'm not a baby anymore -- I know how to be careful -- I don't need you to tell me everything!" This is the same child who a few days ago wanted his mommy to get him a shovel out of the shed because he was afraid a spider or wasp might get him. Well, guess what about 5 min after dad gave up our son got hurt and had to go to first aid. He scraped a bolt and tore the skin off his heal -- nearly needed stitches, but thankfully did not. We did have to leave the park though (hopefully the boy learned his lesson the hard way). The manager was nice and gave up a card to play in the arcade for free the rest of the night -- what a guy! So that's what we did (I snuck out about 1/2 hr before close though). Evidently our son was NASCAR racing an older lady who lives about 5 minutes from us and my hubby said she was awesome and had done some racing in real life -- a super challenge for our son.
Our plan for Sunday was to get up and go the same time and hit all the other cool exhibits that were too busy Sat afternoon. And, that's what we did same arguments by our son a breakfast too.
The first stop was the Aquarium. Oh what a wonderful thing. Sharks and sting rays swimming all around you. Beautiful colors, coral, fish of all kind. The jellyfish were very cool, very relaxing to watch -- like a psychodelic thing. Oh and the penguins all types of penguins. It was at the aquarium that I took the best pic of the trip, as voted by the family. This fish was so ugly it was cute and I caught it at just the right time.
On to the Butterfly and Bug exhibit. Oh my how peaceful! This by far was my fav. The flowers and the hundreds of butterflies. I just can't explain it.
On to the Lied Jungle -- lots of monkeys here. The baby and mom monkey captivated me. It was so interesting to see the families of monkeys interact. I beleive, a lesson from the Lord on mothering. I was trying and trying to get a good picture of them, but the Lord wouldn't have it -- He wanted me to stop, watch and learn. We also saw fish that were longer than I am tall.
Then to the Wild Kingdom. Not too cool for mom and dad, but the kid seemed to like it. Of course -- they had a jeep he could get into and steer.
Back to the Desert Dome Nighttime Exhibit. Dad wanted to see this again so we did. We raced through to the crocs. Then we were done -- we discussed an IMAX but decided we were all too tired and would probably just fall asleep.
Off to the car for the trip home. Our son downed about a dozen 100 cal snacks and fell asleep. We stopped to see the windmills, which may have been the highlight of the trip for my husband.
At home we wearily returned to our routine and went to be very early. A good time was had by all. All of the incidents were minor and the fun was major!
This blog is about Asperger's so here we go. Our plan for this weekend was to not make it about what our son wanted which is why we let the perseveration go on for so long. I don't know if this is true of all Asperger's kids, but our son thinks the world revolves around him and we all exist to please him and appease his every whim. We decided that we were doing what we wanted, when we wanted and if that's what he wanted then it just worked out that way otherwise he was out of luck. So, that's what we did -- I couldn't tell if it was a success or failure. We also decided that nothing would be purchased for him, as this tends to be a problem -- he thinks he has to have something not because it's useful or fun to play with, but just to have it. My husband nearly caved on this but I got to him first. And, I am oh so happy about the I'm not a baby anymore statement. I for one am letting him do for himself as much as possible -- he loves to play helpless or scared -- I'm not falling for it anymore. As I have always said, I think he's just smarter than me.
We arrived Friday about 7:30 pm and hit the waterpark, then the hotel pool, then off to bed. But, Dylan did not want to sleep. Our first meltdown of the weekend. Dad handled this one -- it was not pretty. I pretended to be asleep (as if anyone in the hotel could sleep through that kind of screaming). What a will that child has.
Unbeknownst to us the former dweller of our hotel room had set the alarm for like 5 am. After laying in bed for another hour trying to fall asleep gave up, got up and took a shower and planned the day. I woke everyone else up at 7 am to get dressed, we went to eat and went to the zoo. It worked out perfectly, we got there right after it opened.
The zoo was pretty empty to start with we saw the Cat's, Bears, the list goes on. It was incredible. The thing that sticks out about Saturday was the gorilla exhibit. This gorilla actually came up to our son, stared him down eye-to-ey for a while, did his King Kong thing and kicked the glass. I don't know what that was about, but I'm hoping it was a show of dominance by the gorilla and I'm hoping our son learned a little something from it -- if nothing else too fear the gorilla. Our son was really not effected by this at all -- I expected a freak out, but thankfully no. We watched some gorillas and monkeys play together -- it was so hilarious.
We rode the sky tram which I thought would be fun. Oh was I wrong -- something about not being enclosed in midair nearly elicited an anxiety attack.
The Desert Dome was awesome (and getting there put an end to the perseverating that had been going on all morning by our son about going to the desert dome). They had authentic sand. We were all entranced by the experience. The nighttime, underground part of the desert dome was equipped with an experience of the senses for us humans, many nocturnal animals, a cave, and a swamp with real crocs (dad's fav). The swamp was by far the creepiest with its music and crickets and the looming danger of crocs under fence.
Then the train ride. I'm sure there was more that we saw Sat., but I have forgotten already.
We left for our hotel and some much deserved dinner. We seemed to have a ton of trouble with our child at mealtime. He acted up at breakfast, lunch and dinner. We finally told him to act as if he were with his grandma while we were eating out -- didn't help but at least we planted the idea.
After dinner we were off to Coco Key Waterpark. I rode the waterslides with my son -- they were fun. There was one that was dark, no lights, can't see what's coming -- you get the idea. My don was scared to death, and don't tell him but so was I. I sucked it up for his benefit though. Then we told dad that he had to go down it -- it was the coolest. You get the idea -- he was not pleased with our small fib. Needless to say we did not visit the dark waterslide again, but we rode the heck out of the light one.
After the waterslide fun wore off my son decided to play somewhere else. So the adults sat in the spa for a while -- about 5 minutes. Then it was off to watch over our pride and joy, i.e., yell at him to stop running (we remember the concussion and ER trip from an Oceans of Fun accident a couple weeks ago, but evidently he did not). Dad had to get onto the boy many times to no avail, but he didn't have it in him to make him leave the park like he had threatened. Dad getting onto the boy spurred the boy to yell back at him and one of the things he said was "Dad, I'm not a baby anymore -- I know how to be careful -- I don't need you to tell me everything!" This is the same child who a few days ago wanted his mommy to get him a shovel out of the shed because he was afraid a spider or wasp might get him. Well, guess what about 5 min after dad gave up our son got hurt and had to go to first aid. He scraped a bolt and tore the skin off his heal -- nearly needed stitches, but thankfully did not. We did have to leave the park though (hopefully the boy learned his lesson the hard way). The manager was nice and gave up a card to play in the arcade for free the rest of the night -- what a guy! So that's what we did (I snuck out about 1/2 hr before close though). Evidently our son was NASCAR racing an older lady who lives about 5 minutes from us and my hubby said she was awesome and had done some racing in real life -- a super challenge for our son.
Our plan for Sunday was to get up and go the same time and hit all the other cool exhibits that were too busy Sat afternoon. And, that's what we did same arguments by our son a breakfast too.
The first stop was the Aquarium. Oh what a wonderful thing. Sharks and sting rays swimming all around you. Beautiful colors, coral, fish of all kind. The jellyfish were very cool, very relaxing to watch -- like a psychodelic thing. Oh and the penguins all types of penguins. It was at the aquarium that I took the best pic of the trip, as voted by the family. This fish was so ugly it was cute and I caught it at just the right time.
On to the Butterfly and Bug exhibit. Oh my how peaceful! This by far was my fav. The flowers and the hundreds of butterflies. I just can't explain it.
On to the Lied Jungle -- lots of monkeys here. The baby and mom monkey captivated me. It was so interesting to see the families of monkeys interact. I beleive, a lesson from the Lord on mothering. I was trying and trying to get a good picture of them, but the Lord wouldn't have it -- He wanted me to stop, watch and learn. We also saw fish that were longer than I am tall.
Then to the Wild Kingdom. Not too cool for mom and dad, but the kid seemed to like it. Of course -- they had a jeep he could get into and steer.
Back to the Desert Dome Nighttime Exhibit. Dad wanted to see this again so we did. We raced through to the crocs. Then we were done -- we discussed an IMAX but decided we were all too tired and would probably just fall asleep.
Off to the car for the trip home. Our son downed about a dozen 100 cal snacks and fell asleep. We stopped to see the windmills, which may have been the highlight of the trip for my husband.
At home we wearily returned to our routine and went to be very early. A good time was had by all. All of the incidents were minor and the fun was major!
This blog is about Asperger's so here we go. Our plan for this weekend was to not make it about what our son wanted which is why we let the perseveration go on for so long. I don't know if this is true of all Asperger's kids, but our son thinks the world revolves around him and we all exist to please him and appease his every whim. We decided that we were doing what we wanted, when we wanted and if that's what he wanted then it just worked out that way otherwise he was out of luck. So, that's what we did -- I couldn't tell if it was a success or failure. We also decided that nothing would be purchased for him, as this tends to be a problem -- he thinks he has to have something not because it's useful or fun to play with, but just to have it. My husband nearly caved on this but I got to him first. And, I am oh so happy about the I'm not a baby anymore statement. I for one am letting him do for himself as much as possible -- he loves to play helpless or scared -- I'm not falling for it anymore. As I have always said, I think he's just smarter than me.
Subscribe to:
Comments (Atom)
