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A big thanks to everyone who made it possible for Steve and I to get away for a few days! I know I've said it before but divorce rates are much higher for a couple that child(ren) on the spectrum vs. not and well we've had our share of scary moments to be honest. We decided on this trip that we have to figure out a way to get away together at least 2 times a year. When we go a year or longer we are already on the brink of throwing in the towel so to speak. I knew things were not going well for us so I knew a break was in order and where there's a will, there's a way. I intentionally applied for a credit card that gives enough frequent flier miles for at least 2 round trip flights just for signing up. I was all over that! So thanks to a couple of free flights, a cheap govt rate hotel and some fabulous relatives for watching our children, we jetted off a very much needed get away together. It's sometimes so easy to caught up in day to day stress and even though you know you love eachother and you know why you love eachother, it can begin to drown in all the stress and negativity in life. Our trip was amazing, I cannot remember the last time we were so happy together. It's been a long long time. So thanks again to everyone who made it happen.
The first night we were gone from home, Tyler went around spelling our names and looking around the house for us. i talked to him about us leaving, etc. but I'm not sure if he understood or not, I think he did. He has been amazing all weekend in fact. He's making all kinds of noises and sounds and while we were gone he didnt' have any of his B12 shots. We talked about stopping them again for a bit to see if we see any regression, we also started one of his new medications. I bought some organic fruit/veggy juice suckers to see if we can get him interestedi n suckers, if so, the B12 he needs come in sucker format and we'd like to use those instead, but only when he needs them vs. the injections every other day. I really feel like he's trying so hard right now to communicate and am hoping we'l see a break through soon. Speech is today and she has a new app for the ipad she wants to try with him so I'm excited for that!
We had Tyler all to ourselves on Saturday because ben was at the lake with my aunt. So we took him to an indoor water park. It was so nice to be a one kid family. He loves the water and water slides. he even went down the big slide with dad and ahd a ball, waiting in line wasn't so easy though but we managed. We also worked with him on swimming. He likes to dunk his head under and he holds his breathe, he's doing so well! We had a great time, I'll post pictures soon.
Gotta go for now, just wanted to say thanks for all the support and love that our family receives. We coulnd't make it without you.
Monday, May 24, 2010
Thursday, May 13, 2010
051310
Ok good news and bad news... Bad news is our Dan Doctor/Pediatrician is not only moving out of the city but also no longer accepting any insurance. He's hte pediatrician for both our boys and even though he was a bit quirky, it was so convenient to have one stop shopping. We seem to scare away the pediatricians in our lives.. ha ha. So now we are just trying to figure out whether or not we need a DAN doctor right now or if we can just get a really understanding/open minded pediatrician who is willing to write us scripts for the B12 shots and the other new meds Tyler is on. Not all mainstream docs support the biomedical treatment of autism and heck as an outsider it does seem weird to give a 4 year old anti alcohol and PCOS medication! So we'll begin that search sometime soon. Another set of paperwork and transfer of files, sigh. The paper just never ends does it.
Good news. Ben is staring to adjust better at school. He's making friends now and seems to be less anxious and upset about going to school so that' good. Still tells us every day he doesn't want to go but now sometimes he doesn't want to leave when we pick him up so that's going well. And we've really finally won the battle on food. he knows he has to try everything on his plate, just one bite if he doesn't like it, but he has to try everything or he goes to time out. Does it now with no fuss. just took a lot of patience to get to that point. And he is seriously turning into this adorable little boy.. my goodness he's getting tall.
Tyler is just flourishing right now, really happy, really aware, really wanting to interact. I love it when he's like this.. I want to capture it and make sure it never goes away. He's still really trying to make sure we know what he's talking about and the he can understand us. This morning he grabbed a bird flash card and went to the window and opened the curtains and pointed outside. Then we were packing up to go, a bit hectic as we were running late, and I said come on guys, we gotta go. Ty picked up his electronic leap frog game and typed in Bye. I said yep, we are going bye bye. Gonna have to get him something else soon that one only has space for 3 letter words, ha. He was playing a game in the bathroom on his little computer while i was getting ready and it showed a tree. So eh went to the window and pointed at the trees, i said yep, tree. So then he went to his room and came back with a bin full of letters. So I got the letters out for him and then he spelled tree. I'm like yep little buddy you got it. He recognized the shape of a black tree on the screen of his computer, a real tree outside, and the spelling of the word tree. See he just wants to make sure that we know he "gets it". YES!!! We get it baby and will keep fighting for that little voice of yours to be heard. He's obviously got a lot he wants to share with us.
Brings me to my next topic. I think I may have found a way to get a toughbook laptop computer for free or very discounted, yeah! Hopefully in the next 2 months, if we have that, then we are gonna get the DT training software right away and begin working him on all of that. Another parent at Ty's school is working on a grant to get DT trainer into the classrooms for kids as well. I'd like to get a head start on that this summer. So as soon as we know whether or not we are getting that laptop, we'll purchase an ipad for Ty (well all of us really). Oh how exciting if my boy can start talking to me. I know I've expressed it many times but it's heartbreaking when something is troubling your child and they cannot tell you what it is. Today, really upset at his socks, not sure if he just didn't want them on, if it was on wrong or if god forbid a string got caught wrong and it was cutting off his circulation or something. Poor Ben came running into the kitchen a couple of weeks ago nearly in tears telling me his penis hurt. I pulled his pants down and realized the elastic from his underwear were kinda cutting his poor penis in half decreasing the blood flow. OUCH. See It kills me to think those things are happening to Ty and he can't say hey mom, somethings wrong with _____________! sigh. so if he can type it or even one word that gives me a clue like "ear" if his ear hurts or whatever, until hopefully one day he can talk, well then I'm all for it. Plus he's so super excited about it all. I love his engagement level and the thrill he has to be able to share with us. Oh it gives me such high hopes for him as an adult. And I'm pretty sure that he asked to go potty at school, I asked the teacher for clarification but the notes from school said he urinated after using the potty picture so I'm pretty sure he used his PECS board to tell them he had to go potty. I didn't know whether or not he knew when he ahd to go..apparenlty he does, yipeee.
xoxo
Good news. Ben is staring to adjust better at school. He's making friends now and seems to be less anxious and upset about going to school so that' good. Still tells us every day he doesn't want to go but now sometimes he doesn't want to leave when we pick him up so that's going well. And we've really finally won the battle on food. he knows he has to try everything on his plate, just one bite if he doesn't like it, but he has to try everything or he goes to time out. Does it now with no fuss. just took a lot of patience to get to that point. And he is seriously turning into this adorable little boy.. my goodness he's getting tall.
Tyler is just flourishing right now, really happy, really aware, really wanting to interact. I love it when he's like this.. I want to capture it and make sure it never goes away. He's still really trying to make sure we know what he's talking about and the he can understand us. This morning he grabbed a bird flash card and went to the window and opened the curtains and pointed outside. Then we were packing up to go, a bit hectic as we were running late, and I said come on guys, we gotta go. Ty picked up his electronic leap frog game and typed in Bye. I said yep, we are going bye bye. Gonna have to get him something else soon that one only has space for 3 letter words, ha. He was playing a game in the bathroom on his little computer while i was getting ready and it showed a tree. So eh went to the window and pointed at the trees, i said yep, tree. So then he went to his room and came back with a bin full of letters. So I got the letters out for him and then he spelled tree. I'm like yep little buddy you got it. He recognized the shape of a black tree on the screen of his computer, a real tree outside, and the spelling of the word tree. See he just wants to make sure that we know he "gets it". YES!!! We get it baby and will keep fighting for that little voice of yours to be heard. He's obviously got a lot he wants to share with us.
Brings me to my next topic. I think I may have found a way to get a toughbook laptop computer for free or very discounted, yeah! Hopefully in the next 2 months, if we have that, then we are gonna get the DT training software right away and begin working him on all of that. Another parent at Ty's school is working on a grant to get DT trainer into the classrooms for kids as well. I'd like to get a head start on that this summer. So as soon as we know whether or not we are getting that laptop, we'll purchase an ipad for Ty (well all of us really). Oh how exciting if my boy can start talking to me. I know I've expressed it many times but it's heartbreaking when something is troubling your child and they cannot tell you what it is. Today, really upset at his socks, not sure if he just didn't want them on, if it was on wrong or if god forbid a string got caught wrong and it was cutting off his circulation or something. Poor Ben came running into the kitchen a couple of weeks ago nearly in tears telling me his penis hurt. I pulled his pants down and realized the elastic from his underwear were kinda cutting his poor penis in half decreasing the blood flow. OUCH. See It kills me to think those things are happening to Ty and he can't say hey mom, somethings wrong with _____________! sigh. so if he can type it or even one word that gives me a clue like "ear" if his ear hurts or whatever, until hopefully one day he can talk, well then I'm all for it. Plus he's so super excited about it all. I love his engagement level and the thrill he has to be able to share with us. Oh it gives me such high hopes for him as an adult. And I'm pretty sure that he asked to go potty at school, I asked the teacher for clarification but the notes from school said he urinated after using the potty picture so I'm pretty sure he used his PECS board to tell them he had to go potty. I didn't know whether or not he knew when he ahd to go..apparenlty he does, yipeee.
xoxo
Monday, May 10, 2010
5/10/10
The best thing about having kids is that they certainly know how to make a crappy day into a fantastic one. Let's just say Tyler was awesome at speech today. I'm not sure I've mentioned this or not but we have an assistive technology mtg. set up a school for the end of the month. ok it's coming back to me, pretty sure I have mentioned it before. I don't have much time so I'll cut to the chase. We really want to get a ipad or itouch and a touch screen computer for tyler (and the rest of us too of course). There are many many useful communication and learning apps that can help Tyler. we've already started researching touch screens on ebay and considered opening bank accounts where they are giving away free itouches.. (seriously) where there's a will there's a way, tee hee. Anyway after speech today I'm definetly much more for an ipad than an itouch due to the size of the screen, buttons, etc. would be easier for Tyler to use. I'm gonna attach 3 videos if time allows. We did other things other than these, there were car/animal sounds and he'd push whatever he wanted to get teh sound and then we'd make him make a certain sound to hear it again, etc. So we did use the ipad for specific speech stuff (great reinforcer) however then Carol began to test his cognitiive skills. First video will show Tyler looking at the screen, has 6 pictures on it and then a word at the bottom and there is a voice telling him what the word says adn to find it. So he touches the right picture and it will give some sort of verbal attaboy! The next video is when she started to test his cognitive skills, she removed the verbal prompts from the options and not only do you see he starts to answer more quickly but he also is enjoying it much more, he begins to get the giggles, run around in delight and truly seem to enjoy the experience of showing us what he knows. He's so super smart. You will also see him try to make real world connectinos, i.e. he reads the word "window" on the screen with no verbal prompts and then runs to the door and touches the window within the door. Then it lists the word "door" and he runs and touches the door handle in addition to touching the picture on the screen. Started writing this yesterday and didn't have time to post it so I'll add something that happend last night. Tyler was playing with his singing time flash cards in his bedroom, I'd say about 50 of them. He wanted me to play with him, he really really seems interested right now and making sure I know he knows what he's talking about so to speak. For example, he was also playing with the cards in the kitchen while I was cookign dinner and he pulled out the sock flash card and kept pointing to his socks until I looked. Anyway, he wanted me to play with him in his room with the cards, I had went into my bathroom to change my clothes. He was pulling my hand to come with him so I said one minute, mommy has to go potty. He ran away, I went potty, then he comes running back in and handed me the "potty" flashcard! AWESOME.
Ok sorry to not really wrap things up but I gotta go, hopefully I clearly stated what's going on int he video, the quality is bad so it's hard to see what's exactly on the ipad screen but take my word for it.. my boy can read ;)
Ok sorry to not really wrap things up but I gotta go, hopefully I clearly stated what's going on int he video, the quality is bad so it's hard to see what's exactly on the ipad screen but take my word for it.. my boy can read ;)
Wednesday, May 5, 2010
5/5/10 Cinco de mayo
Happy Margarita day everyone:) Just wanted to let you all know that Tyler has been nothing short of amazing this past week. I teared up at speech on Monday twice because I was just so happy for him. Of all the days for me not to bring my phone in and video...grrr.... Tyler was doing a great job of sitting. I know this seems like a small feat, however, there are days where I can't even get him to sit for a split second, he's floppign around and throwing him self back, etc. He sat so well on Monday and even stayed seated and not agitated when betwen actvities, i.e. the therapist putting away one set of toys and getting out another set. He also had very clear signs. no scrolling, no problems, just very clear. He requested "blue" and he also requested "duck" both crystal clear to the therapist. He was making all kinds of sounds upon request, with no frustration and littel prompting. In fact there were a few times I heard him correct himself.. makes an ahhh sound and supposed tobe an "ohhh" sound you could hear him correcting himself. It's hard to explain without you actually seeing him but take my word, he rocked that session. Once again..a very very big thanks to some of Tyler's guardian angels for helping us pay for speech this month.
The only problem we've been having with Ty is his sleep habits, he's been waking up very very early, between 4:45 and 5:20. Not only does this cause us issues with trying to get ready for work in the morning but it also means that Ty is passing out around 5:30 each night and then the cycle would continue. We finally broke it the other night so hopefully we are back on track with him getting up at 6:30 instead. Gonna be tricky if we ever have to have the boys share a room, at least in the near future. When Tyler gets up, he turns the light on and starts playing which would obviously wake up Ben. Ben is an emotional boy in the morning so I can only imagine how much fun he'd be at 4:45! ICK. We've been considering downgrading our living situation to free up some cash flow each month so things aren't so tight and then we can do more fun/stress releiving things as a family and a couple and be able to better afford services for Tyler. We also want to make sure we keep ben enrolled in social activities as he's struggling a bit with his social skills right now (has me paranoid of course).
This is the thing.. I realized something this weekend, something beautiful about autism. Yep, there are a few and I occasionally comment on them. I took the boys to play at a mcdonalds play land. At one point both boys were up in the structure which was awesome, usually Ty just runs back and forth on the floor and climbs up the slide, but this time Ty did play functionally. Anyway, the beauty of autism is that Tyler is blissfully unaware that no one wants to play with him. He is carefree, running around laughing and squealing and haveing a great time. I watched him thinking, we all should be a bit more like Ty. He's just happy being and could care less what anyone around him is thinking or the fact that they don't want to be with him. ON the other hand, we have Ben, who was literally begging kids to play with him and they wouldn't. That was heartbreaking to watch. He jus tkept saying, will someone play with me please. We are working with him a lot on social interaction and appropriate ways to play. Once again, mommy guilt kicks in that we haven't had a lot of social opportunities for Ben in the past so he has some catch up to do. Anyway I did step in and give him tips. There was a shy litte girl there so I suggested they play hide and seek and that worked for a bit, I also suggested he chase TY around and play follow the leader. another group of kids were in a birthday party type situation so they were kinda of ignoring him and he was sad. It was just awesome that Ty is oblivious to all of that. It makes me happy to know those things aren't going to bother him in life. Oh, back to my "working on it" though, at the park this weekend, I worked with Ben on what it means to play with someone and not just play what you want to play. This was hard for him to understand but eventually he did do what I watned so we cuold dow hat he wanted, etc. Which reminds me.. Steve's bday was this weekend so Grandma Taylor came down to watch the boys so I could take steve out to dinner. The boys loved playing with Grandma Taylor, thanks grandma!!!! Ben said how sad he was when she left, aweeee...
Other than saying how high divorce rates are for couples that have children with autism and commenting occasinoally that it all takes it's toll, I haven't really gotten into the specifics of my marriage, mostly because this blog is about Tyler. However there was a great article recently in good housekeeping (may have mentioned this already) and if you haven't read it, it truly is exactly how Steve and I were for the first 3 years of the whole autism thing. In fact, it's a pretty common story with most couples. Mother accepts and starts fighting quickly, father feels guilt and resentment and struggles to move forward and a barrier comes between the couple and so the problems begin. It's easy as outsider to see and undestand how it all happens and how easily fixable it could be but i promise you when you are in the situation, it's pretty tough! So now, it's taken 3.5 years but we are definetly on het same page in regards to Tyler. I think our last major issue over his care was last fall and we worked through it with success. But what I've never touched on, is what happens after all of that, after you agree upon what to do, after you figure out the money, after you manage schedules, etc. what happens after that is actualy chaos. Ok you have a plan in place but there is only so much time in a day to accomplish everything and to be honest, it's impossible.
So our arguments after figuring out all the autism crap, is just that, how to accomplish the rest of life that falls into priority after the autism crap. That's where it gets tricky. I read an article recently that must have been for mothers day and talked about superwomen and in this day and age woman feel the need to do it all and feel like failures if they don't. The author said how she had a friend who was as stay at home mom who feels guilty for not contributing more to society. A restaurant owner who feels she doesn't spend enough time with her family, etc. The bottom line is we can't be all things to all people at one given time. It was a great article, it focused on being happy in the moment, how to find happiness with life just as it is now, so what if the laundry is piling up, or if you have to order pizza and don't have time to cook a healthy meal, in the grand scheme of life, who cares. Sort of a don't sweat the small stuff. I talked to Steve immediately after reading it saying I wanted that. I want to find a way for us to be happy now vs. continually planning for the future. Sure we all have to set goals but I think it's incredibly important to choose to be happy right now, because it is a choice. So I guess that's my theme for this blog update. Watching Tyler at speech on Monday made me incredibly happy. Sure Mondays are hard for me, i'm gone for 2 hours in the middle of the day from work to get ty and take him to speech and take to daycare so I try to get to work early to accomodate, which means getting up early, which means my entire day on Monday's from 5:00 on is a go/go/go. Even when we get him which is later now, it's a rush to get dinner made and on the table before Tyler passes out. Given all that.. I sat there on Monday watching him at speech, and I was so incredibly happy, not caring what was happening at work while I was away or what was going to be waiting for me when I got back, what I was going to do for dinner or anything else. I was happy just to be and enjoy watching my amazing son. We all should choose to be happy more often. I know I'm going too!
xoxo
The only problem we've been having with Ty is his sleep habits, he's been waking up very very early, between 4:45 and 5:20. Not only does this cause us issues with trying to get ready for work in the morning but it also means that Ty is passing out around 5:30 each night and then the cycle would continue. We finally broke it the other night so hopefully we are back on track with him getting up at 6:30 instead. Gonna be tricky if we ever have to have the boys share a room, at least in the near future. When Tyler gets up, he turns the light on and starts playing which would obviously wake up Ben. Ben is an emotional boy in the morning so I can only imagine how much fun he'd be at 4:45! ICK. We've been considering downgrading our living situation to free up some cash flow each month so things aren't so tight and then we can do more fun/stress releiving things as a family and a couple and be able to better afford services for Tyler. We also want to make sure we keep ben enrolled in social activities as he's struggling a bit with his social skills right now (has me paranoid of course).
This is the thing.. I realized something this weekend, something beautiful about autism. Yep, there are a few and I occasionally comment on them. I took the boys to play at a mcdonalds play land. At one point both boys were up in the structure which was awesome, usually Ty just runs back and forth on the floor and climbs up the slide, but this time Ty did play functionally. Anyway, the beauty of autism is that Tyler is blissfully unaware that no one wants to play with him. He is carefree, running around laughing and squealing and haveing a great time. I watched him thinking, we all should be a bit more like Ty. He's just happy being and could care less what anyone around him is thinking or the fact that they don't want to be with him. ON the other hand, we have Ben, who was literally begging kids to play with him and they wouldn't. That was heartbreaking to watch. He jus tkept saying, will someone play with me please. We are working with him a lot on social interaction and appropriate ways to play. Once again, mommy guilt kicks in that we haven't had a lot of social opportunities for Ben in the past so he has some catch up to do. Anyway I did step in and give him tips. There was a shy litte girl there so I suggested they play hide and seek and that worked for a bit, I also suggested he chase TY around and play follow the leader. another group of kids were in a birthday party type situation so they were kinda of ignoring him and he was sad. It was just awesome that Ty is oblivious to all of that. It makes me happy to know those things aren't going to bother him in life. Oh, back to my "working on it" though, at the park this weekend, I worked with Ben on what it means to play with someone and not just play what you want to play. This was hard for him to understand but eventually he did do what I watned so we cuold dow hat he wanted, etc. Which reminds me.. Steve's bday was this weekend so Grandma Taylor came down to watch the boys so I could take steve out to dinner. The boys loved playing with Grandma Taylor, thanks grandma!!!! Ben said how sad he was when she left, aweeee...
Other than saying how high divorce rates are for couples that have children with autism and commenting occasinoally that it all takes it's toll, I haven't really gotten into the specifics of my marriage, mostly because this blog is about Tyler. However there was a great article recently in good housekeeping (may have mentioned this already) and if you haven't read it, it truly is exactly how Steve and I were for the first 3 years of the whole autism thing. In fact, it's a pretty common story with most couples. Mother accepts and starts fighting quickly, father feels guilt and resentment and struggles to move forward and a barrier comes between the couple and so the problems begin. It's easy as outsider to see and undestand how it all happens and how easily fixable it could be but i promise you when you are in the situation, it's pretty tough! So now, it's taken 3.5 years but we are definetly on het same page in regards to Tyler. I think our last major issue over his care was last fall and we worked through it with success. But what I've never touched on, is what happens after all of that, after you agree upon what to do, after you figure out the money, after you manage schedules, etc. what happens after that is actualy chaos. Ok you have a plan in place but there is only so much time in a day to accomplish everything and to be honest, it's impossible.
So our arguments after figuring out all the autism crap, is just that, how to accomplish the rest of life that falls into priority after the autism crap. That's where it gets tricky. I read an article recently that must have been for mothers day and talked about superwomen and in this day and age woman feel the need to do it all and feel like failures if they don't. The author said how she had a friend who was as stay at home mom who feels guilty for not contributing more to society. A restaurant owner who feels she doesn't spend enough time with her family, etc. The bottom line is we can't be all things to all people at one given time. It was a great article, it focused on being happy in the moment, how to find happiness with life just as it is now, so what if the laundry is piling up, or if you have to order pizza and don't have time to cook a healthy meal, in the grand scheme of life, who cares. Sort of a don't sweat the small stuff. I talked to Steve immediately after reading it saying I wanted that. I want to find a way for us to be happy now vs. continually planning for the future. Sure we all have to set goals but I think it's incredibly important to choose to be happy right now, because it is a choice. So I guess that's my theme for this blog update. Watching Tyler at speech on Monday made me incredibly happy. Sure Mondays are hard for me, i'm gone for 2 hours in the middle of the day from work to get ty and take him to speech and take to daycare so I try to get to work early to accomodate, which means getting up early, which means my entire day on Monday's from 5:00 on is a go/go/go. Even when we get him which is later now, it's a rush to get dinner made and on the table before Tyler passes out. Given all that.. I sat there on Monday watching him at speech, and I was so incredibly happy, not caring what was happening at work while I was away or what was going to be waiting for me when I got back, what I was going to do for dinner or anything else. I was happy just to be and enjoy watching my amazing son. We all should choose to be happy more often. I know I'm going too!
Tuesday, April 27, 2010
4/27/10
Yeah, I'm back online. Have something so exciting to share, I'm making the time to get on and write it down before I forget. On Sunday, Grandma was gettign ready to leave and giving us all hugs goodbye. She was by the door and Steve was helping her get her things around and Tyler was playing with one of his electronic alphabet leap frog toys. I was sitting with Tyler on the floor and he typed in "B" "Y" "E" and then the toy said "bye" and he waved goodbye to grandma. Steve and I just looked at eachother and teared up.... he's so smart! He's also just been amazing lately, "With it" almost all of the time. Sure he has his little habits like chewing his clothes and repetative behavior, etc. but he's really aware right now and interactive and talkative. Just a really great kid to be around.
Oh and Ty is starting to get his first freckles:) His after school school if that makes sense is outside most of the afternoons and he's getting more sun than he's used to I think so his little freckles are coming out. Speaking of which we've been busy transitioning the boys into new schools. Ben is attending a new all day preschool and is having trouble adjusting. We all are subsequently having trouble adjusting and working to help ease his transition as well as the behavior problems that are occuring as a result of the transition. Steve said last night, you knwo Melissa it's just because he hasn't been in school prior to this and hasn't had much socializiation or structured enviroment, etc. Yep I know, and that just makes me feel more guilty about the whole thing. we essentially kept choosing Tyler over Ben in terms of priorities and resources and now Ben is suffering a bit and it breaks my heart. Tells us every day he doesn't want to go to school..actually he says he doesn't want to go to "his school" he wants to go to a different one. He's hitting other kisd for no reason, just walkign up and punching them and having numerous potty accidents in a day now. It's really heart breaking. Again we are working with the school on all of it and setting up reward systems for good behavior but my mommy guilt is in full force right now.
As for TY, he transitioned better than I thought. He likes school in fact, he even rides the bus from his first sfchool to his second and as far as everyone tells me, he's doing great. But then again when I go pick him up from his second school, all the kids are playing in the back on teh equipment and in the sandbox and TYler is kinda just running around aimlessly chewing on his clothes. So I'm not sure how much of a learning/social environment it's creating for him but it is good that he's around typical kids. In fact, the directors daughter has taken a bit of a liking to Tyler. Mentioned to her mom the other day that Tyler doesn't talk to her and asked if that meant that he didn't like her. aweee.. hopefully they'll be many of those kinds of kids throughout his life. I really wish we could send Ben to Ty's school, we can't afford it. We pay more for TYler to go part time (2:30 - 5:00) than we do for Ben to go full time (7:45 - 5:45)... so Ben going full time where Ty goes is just not an option but it was a good part time solution for TY.
Right now we are gearing up to plan the summer programming. Summer school 3 days a week in July, splash camp 5 days a week in August. we are working through schedules, costs, etc. how to get Ty fron place to place and where TYler will be and when. His preschool/daycare is a pay a month in advance type situation so I have to have everything planned out well ahead of time. If anyone would like to spend any days/time with Tyler this summer let me know!! He has a few days here and there where he won't have any type of therapy going on and I'm very anxious about him staying at either his or Ben's preschool/daycare for a whole day. Would love to have some visitors stay and play with Ty thsi summer at our house and it would save us lots of $$$ too, so please, volunteer :)
ok, I have lots more to say, just not enough time. Love to all.
Oh and Ty is starting to get his first freckles:) His after school school if that makes sense is outside most of the afternoons and he's getting more sun than he's used to I think so his little freckles are coming out. Speaking of which we've been busy transitioning the boys into new schools. Ben is attending a new all day preschool and is having trouble adjusting. We all are subsequently having trouble adjusting and working to help ease his transition as well as the behavior problems that are occuring as a result of the transition. Steve said last night, you knwo Melissa it's just because he hasn't been in school prior to this and hasn't had much socializiation or structured enviroment, etc. Yep I know, and that just makes me feel more guilty about the whole thing. we essentially kept choosing Tyler over Ben in terms of priorities and resources and now Ben is suffering a bit and it breaks my heart. Tells us every day he doesn't want to go to school..actually he says he doesn't want to go to "his school" he wants to go to a different one. He's hitting other kisd for no reason, just walkign up and punching them and having numerous potty accidents in a day now. It's really heart breaking. Again we are working with the school on all of it and setting up reward systems for good behavior but my mommy guilt is in full force right now.
As for TY, he transitioned better than I thought. He likes school in fact, he even rides the bus from his first sfchool to his second and as far as everyone tells me, he's doing great. But then again when I go pick him up from his second school, all the kids are playing in the back on teh equipment and in the sandbox and TYler is kinda just running around aimlessly chewing on his clothes. So I'm not sure how much of a learning/social environment it's creating for him but it is good that he's around typical kids. In fact, the directors daughter has taken a bit of a liking to Tyler. Mentioned to her mom the other day that Tyler doesn't talk to her and asked if that meant that he didn't like her. aweee.. hopefully they'll be many of those kinds of kids throughout his life. I really wish we could send Ben to Ty's school, we can't afford it. We pay more for TYler to go part time (2:30 - 5:00) than we do for Ben to go full time (7:45 - 5:45)... so Ben going full time where Ty goes is just not an option but it was a good part time solution for TY.
Right now we are gearing up to plan the summer programming. Summer school 3 days a week in July, splash camp 5 days a week in August. we are working through schedules, costs, etc. how to get Ty fron place to place and where TYler will be and when. His preschool/daycare is a pay a month in advance type situation so I have to have everything planned out well ahead of time. If anyone would like to spend any days/time with Tyler this summer let me know!! He has a few days here and there where he won't have any type of therapy going on and I'm very anxious about him staying at either his or Ben's preschool/daycare for a whole day. Would love to have some visitors stay and play with Ty thsi summer at our house and it would save us lots of $$$ too, so please, volunteer :)
ok, I have lots more to say, just not enough time. Love to all.
Friday, April 9, 2010
4/9/10
So sorry for the delay, everyone has been sick for over a week now. First it was colds, then Ty had a fever, then he started vomiting, then lingerling diarreah (all while still having the cold) and then Ben piped up with a small fever, then vomiting (just once though) and now the diarreah and to fully celebrate the last day of daycare today at Miss Karen's, Tyler decided to puke just one last time (hadn't puked since Sun) and I"m pretty sure she's still dealing with a faucet coming out of ben's booty. She's probably gonna have a big party tonight after bidding a final adeu to my boys.. they are such little walking super germs! lol... I was home with Tyler on Monday, Ben joined in Tuesday and god bless Grandma Taylor who came to watch both of the boys on Wednesday as Steve adn I both have super busy work weeks and neither of us could stay home on Wednesday, thanks Grandma!!!!!
So everyone say a big prayer and cross your fingers because both boys go to new preschools on Monday and we need them to be healthy! Ben is really excited to go to school. I already got him a camoflauge lunch bag, now we just need a backpack and suprisingly he told me he wanted a Diego backpack. hopefully I'll get a chance to take him shopping this weekend if his diarreah will go away. It's pretty bad right now. He'll be going all day to a large preschool facility near our house. Tyler is going to be going to an even bigger preschool but only after his regular preschool so he'll only be there for about 3 hours a day with the exception of Monday when he has speech therapy. I'll be doign that on my lunch hour and then taking him to the new preschool, but Tuesday - Friday, our little guy will be riding the bus from his regular preschool to this new preschool/after school care. Don't worry they have 5 point harness restraints on the bus, I already asked.
Steve and I are both super super nervous about Monday and this big change in our lives... so the added element of possibly lingering illnesses is not helping matters. Winter is over already, my family deserves health.
Ok so maybe I can share a little humor for once.... my aunt pointed out how humorous one of these stories is at least looking at it from an outsider.
Let's see..Monday night I started not feeling well at all and by Tuesday morning I was running a fever and caring for Ty who was feeling better but just still had diarreah so he had far more energy then me. Then the cal from daycare that Ben was feeling nauseated.. so we go get Ben and come back. Ben is also very energetic which was kinda awesome cause he was helping me with Ty. Ty likes the trains to work in a certain way certain cars go one way certain cars go an another path.. yuo have to assist him with the process, Ben knows it so I coul dhave ben Help him. Then it's lunch time.... I get the kids lunches ready. Ben was compaining of a stomach ache..at this point I'm still thinking he's faking being sick cause he watned to be home with mom. Made a huge fuss about not wanting to go to daycare that day adn then suddently his belly hurt. he occasionally has bowel trouble so we usually give him benefiber for children in the evening in his rice milk. The past cuople of nights however, we hadn't, because we got a new nutritional drink for him to have at night to try to fatten him up a bit. So I figure he must be constipated, I couldn't remember the last time he had poo"d so I made his rice milk with benefiber mixed in and Tyler's was a nice little cocktail of probiotics and enzymes. We sit down to lunch and everyone is doing great and Tyler hands me his cup and signs milk to tell me he wants more milk and I look down and there's a big "B" on his cup. UGH!!!!!!!! He drink Ben's milk which had benefiber in it. Tyler had been having diarreah since Friday, it's not Tuesday, still diarreah and he just drank fiber! Now add this to the pressure that at this point we didn't have anyone to watch the boys yet the next day and now i may have extended the diarreah, not good. But funny as an afterthought.
Ok story #2, Thursday morning, we are getting ready to go to miss karen's. Ty is on spring break this week so its actually making us have to leave a bit earlier. So I say it's time to go, Ty is upset at his leapster. We are walking out and he keeps handing it to me to tell me something is wrong (kinda making a whiny frustrated noise) but won't let go or let me see the screen to figure it out but in the mean time he's refusing to walk, Ben's already in the garage. Finally I just move him along and he's resisting, gets mad at my alternative toy. Ben climbs in his chair, I stand Tyler in the car and tell him it's broken and I do not have time to fix it. Tyler is melting down and refusing to sit in his chair, Ben is already in his chair and then Ben goes, uh oh, I gotta poop. DANG.. diarreah. Ok so Im like ok Ben we gotta hurry.... I race Ben inside to sit him on potty while Tyler, my autisitic non-verbal boy is standing unrestrained in my vehicle which is running in the garage (door open at least) and alone. eeeekkk.... I race ben in whipped down his pants, and raced back up and strapped a screaming kid in his seat and turned on a video and hoped fo rthe best so I could go back in and help Ben with his poo... on way to daycare steve texts me to see how the kids are doing... lol.... just another day in paradise honey :)
onto some fun things about Ty and his abilities. He got some letter beads which he got for his birthday. You are supposed to lace them with a string but we played with them while the boys were sick and just made the alphabet, words, etc. Tyler, all on his own, spelled Ben and then ran into the living room, touched Ben and got the giggles. It was awesome, so smart. So then I asked him to spell mom and that one stumped him so I asked him to spell dog and he got out the D and the O but then struggled to find the "g" I do believe he knew how to spell dog just couldn't find the G in the mix of all the otehr letters because once I kind of narrowed down the options for him, he got it! It's has to be incredibly frustrating fo rhim to have all this knowledge and ability in his head and not be able to verbalize it. I can't even imagine what it's like to be Tyler some days.
So everyone say a big prayer and cross your fingers because both boys go to new preschools on Monday and we need them to be healthy! Ben is really excited to go to school. I already got him a camoflauge lunch bag, now we just need a backpack and suprisingly he told me he wanted a Diego backpack. hopefully I'll get a chance to take him shopping this weekend if his diarreah will go away. It's pretty bad right now. He'll be going all day to a large preschool facility near our house. Tyler is going to be going to an even bigger preschool but only after his regular preschool so he'll only be there for about 3 hours a day with the exception of Monday when he has speech therapy. I'll be doign that on my lunch hour and then taking him to the new preschool, but Tuesday - Friday, our little guy will be riding the bus from his regular preschool to this new preschool/after school care. Don't worry they have 5 point harness restraints on the bus, I already asked.
Steve and I are both super super nervous about Monday and this big change in our lives... so the added element of possibly lingering illnesses is not helping matters. Winter is over already, my family deserves health.
Ok so maybe I can share a little humor for once.... my aunt pointed out how humorous one of these stories is at least looking at it from an outsider.
Let's see..Monday night I started not feeling well at all and by Tuesday morning I was running a fever and caring for Ty who was feeling better but just still had diarreah so he had far more energy then me. Then the cal from daycare that Ben was feeling nauseated.. so we go get Ben and come back. Ben is also very energetic which was kinda awesome cause he was helping me with Ty. Ty likes the trains to work in a certain way certain cars go one way certain cars go an another path.. yuo have to assist him with the process, Ben knows it so I coul dhave ben Help him. Then it's lunch time.... I get the kids lunches ready. Ben was compaining of a stomach ache..at this point I'm still thinking he's faking being sick cause he watned to be home with mom. Made a huge fuss about not wanting to go to daycare that day adn then suddently his belly hurt. he occasionally has bowel trouble so we usually give him benefiber for children in the evening in his rice milk. The past cuople of nights however, we hadn't, because we got a new nutritional drink for him to have at night to try to fatten him up a bit. So I figure he must be constipated, I couldn't remember the last time he had poo"d so I made his rice milk with benefiber mixed in and Tyler's was a nice little cocktail of probiotics and enzymes. We sit down to lunch and everyone is doing great and Tyler hands me his cup and signs milk to tell me he wants more milk and I look down and there's a big "B" on his cup. UGH!!!!!!!! He drink Ben's milk which had benefiber in it. Tyler had been having diarreah since Friday, it's not Tuesday, still diarreah and he just drank fiber! Now add this to the pressure that at this point we didn't have anyone to watch the boys yet the next day and now i may have extended the diarreah, not good. But funny as an afterthought.
Ok story #2, Thursday morning, we are getting ready to go to miss karen's. Ty is on spring break this week so its actually making us have to leave a bit earlier. So I say it's time to go, Ty is upset at his leapster. We are walking out and he keeps handing it to me to tell me something is wrong (kinda making a whiny frustrated noise) but won't let go or let me see the screen to figure it out but in the mean time he's refusing to walk, Ben's already in the garage. Finally I just move him along and he's resisting, gets mad at my alternative toy. Ben climbs in his chair, I stand Tyler in the car and tell him it's broken and I do not have time to fix it. Tyler is melting down and refusing to sit in his chair, Ben is already in his chair and then Ben goes, uh oh, I gotta poop. DANG.. diarreah. Ok so Im like ok Ben we gotta hurry.... I race Ben inside to sit him on potty while Tyler, my autisitic non-verbal boy is standing unrestrained in my vehicle which is running in the garage (door open at least) and alone. eeeekkk.... I race ben in whipped down his pants, and raced back up and strapped a screaming kid in his seat and turned on a video and hoped fo rthe best so I could go back in and help Ben with his poo... on way to daycare steve texts me to see how the kids are doing... lol.... just another day in paradise honey :)
Thursday, April 1, 2010
Tyler is doing really great potty training at school. He was dry all day last Thursday at school and he goes potty within 30 seconds, typically, of them sitting him on the potty. Really proud of him. In fact the other day, he was between potty sitting times at school and the parapro noticed him kinda squatting and he looked at the toilet and she said somethign to the effect of you can go potty so he jumped on the toilet and went poo poo. Now we just need to find a way to have time for this schedule at our house. Sit on potty for 3 mins, off potty (no pants on for 10) back on potty for 3. That's a lot of potty and you gotta sit with him.
This past weekend I took Steve to the gym with me. I initially chose the place because it was inexpensive, all classes are included in the cost, and best of all they had childcare facilities and upon further review, staff with experience in special ed. So Saturday was the first time we all went, finally got all the paperwork together I needed to get the boys in there. As we were signing in, the lady asked their names so I introduced them and then said this is Tyler, he has autism and is non verbal. She hollers back into the play area, "ERIN".... so Erin comes running up.. teh lady mentions Erin is their special ed expert. So Erin goes.. hey, were you guys at splash camp last year? Um yep! She remembered Tyler adn me. She worked the camp last year, yeah, then I knew he was in good hands. The boys were there for almost 2 hours and did fantastic adn it was nice for Steve and I to be able to work out together.
Upon leaving there we went to lunch and luckily we've got that system down for the most part, then we took the boys to Toysrus to use their gift cards. Tyler got a bike helmet which he's not at all happy about, school is helping us work with him on wearing it. It's really becoming apparant to people in the outside world tha tsomething isn't quite right with Tyler due to his behavior. For example, Steve and I took turns hanging out with Ty at the front of TOys r us for the most part, wher ehe played with random toys but not the way normal kids would play. his nose is about 1 cm fron the floor as he crawls to chase a wind up toy for example. Then he screeches and squeals and runs in circles with delight. Got a few looks for sure.
We ran another couple of errands and ended up at stride right, they are having a buy one get one 50% off sale and we needed to get the boys their summer shoes. Tyler never functions well in stride rite, it's hot, bright lights, lots of people and kids in a small space, his idea of hell really. So he's melting down after we sized him (which by teh way the lady was awesome, we said right up front, Tyler has autism and doesn't understand shoe sizing and you need to be fast!! she rocked). so she got the new shoes and tried them on tyler as I was doing my kisses/breathes to his neck and he giggled but this was all because hew as starting to melt down. Then he albeit refused to put his old shoes back on and was screaming and flopping around, he kinda becomes liquid and you cant' even get him to hold himself in any position. WEll supermom next to us kept staring an disgust like can't you keep your kids in order. GRRRR.. I was just hoping she'd say something to me. I mean for petes sake there was a 2 year period where we never were able to go out to eat as a family, and not only had we done that but Tyler had been in a new play facility, went to a toy store and was awesome the whole time so give the kid who is on sensory overload a frickin' break already. So she was lucky..ddin't mention a word to me because believe me I had a comeback. Then speech mentioned something to me. She had a mom once who handed out cards to people looking at them and never said anything. I made cards a while back, and I really liked this idae, want to revisit it. Because I don't watn Tyler to be able to use "autism" as an excuse in life, I also don't watn Ben to constantly hear me tell people Tyler has autism, as if it's an excuse for bad behavior, not that it's not a reason. I just feel like if I can inform people quietly about the situation and provide a littel education in the mean time without the kids even knowing it, that's not such a bad plan. Ok so we got shoes (they are finally in different sizes) and went to the play area. Tyler went up to a complete stranger (mom) on the sidelines and wanted her cinnastick. I apologized for his behavior and she goes oh it's ok can he have it. I said unfortunately no, he's on a very strict diet but thank you so much. Then later he runs up to a lady on teh otehr side (must like the chics) and tried to pull her down to play horse with him. aweweee... and super dad Steve came over and played horse with Tyler :) what a great daddy.
Have been writing this update for a couple of days, cant' seem to find enough time to complete it. Both the boys seems to have colds, runny noses, coughs, a bit whiny...usually April is their last cold of the season, hopefully this is it :)
So Tyler's new medication
The new medication is on order. The names are spironolactone and naltrexone.
Sprinolactone: This drug takes several days to take effect. It is a synthetic steroid that acts as a competitive antagonis to alosterone. Boys with autism tend to have higher than normal levels of testosterone. Strangely enough, it's also used to treat PCOS (poycustic ovarian syndrome), hey, maybe I should take it too!
Naltrexone: is an opioid receptor antagonist used primarily in teh mgmt of alcohool dependendce (whoa). As you may recall from earlier posts, the biomedical beliefs of autism that these kids cannot break downt eh toxins and proteins properly in their bodies and they they become opiate type inhibitors in the brain, making them act as if they were on opiates, this drug essentially supposed to block this type of response. Or maybe the doctor thinks ty is an alcoholic.. jk of course.
Ok, here is an intersting link to an article about the potential that autism is caused by a virus.
http://www.huffingtonpost.com/david-kirby/is-autism-associated-with_b_316986.html
P.S. Ben woke up me at 4 a.m. to tell me he was taking a really really good nap! I said, good, keep sleeping. THen of course I couldn't fall back asleep..little bugger
This past weekend I took Steve to the gym with me. I initially chose the place because it was inexpensive, all classes are included in the cost, and best of all they had childcare facilities and upon further review, staff with experience in special ed. So Saturday was the first time we all went, finally got all the paperwork together I needed to get the boys in there. As we were signing in, the lady asked their names so I introduced them and then said this is Tyler, he has autism and is non verbal. She hollers back into the play area, "ERIN".... so Erin comes running up.. teh lady mentions Erin is their special ed expert. So Erin goes.. hey, were you guys at splash camp last year? Um yep! She remembered Tyler adn me. She worked the camp last year, yeah, then I knew he was in good hands. The boys were there for almost 2 hours and did fantastic adn it was nice for Steve and I to be able to work out together.
Upon leaving there we went to lunch and luckily we've got that system down for the most part, then we took the boys to Toysrus to use their gift cards. Tyler got a bike helmet which he's not at all happy about, school is helping us work with him on wearing it. It's really becoming apparant to people in the outside world tha tsomething isn't quite right with Tyler due to his behavior. For example, Steve and I took turns hanging out with Ty at the front of TOys r us for the most part, wher ehe played with random toys but not the way normal kids would play. his nose is about 1 cm fron the floor as he crawls to chase a wind up toy for example. Then he screeches and squeals and runs in circles with delight. Got a few looks for sure.
We ran another couple of errands and ended up at stride right, they are having a buy one get one 50% off sale and we needed to get the boys their summer shoes. Tyler never functions well in stride rite, it's hot, bright lights, lots of people and kids in a small space, his idea of hell really. So he's melting down after we sized him (which by teh way the lady was awesome, we said right up front, Tyler has autism and doesn't understand shoe sizing and you need to be fast!! she rocked). so she got the new shoes and tried them on tyler as I was doing my kisses/breathes to his neck and he giggled but this was all because hew as starting to melt down. Then he albeit refused to put his old shoes back on and was screaming and flopping around, he kinda becomes liquid and you cant' even get him to hold himself in any position. WEll supermom next to us kept staring an disgust like can't you keep your kids in order. GRRRR.. I was just hoping she'd say something to me. I mean for petes sake there was a 2 year period where we never were able to go out to eat as a family, and not only had we done that but Tyler had been in a new play facility, went to a toy store and was awesome the whole time so give the kid who is on sensory overload a frickin' break already. So she was lucky..ddin't mention a word to me because believe me I had a comeback. Then speech mentioned something to me. She had a mom once who handed out cards to people looking at them and never said anything. I made cards a while back, and I really liked this idae, want to revisit it. Because I don't watn Tyler to be able to use "autism" as an excuse in life, I also don't watn Ben to constantly hear me tell people Tyler has autism, as if it's an excuse for bad behavior, not that it's not a reason. I just feel like if I can inform people quietly about the situation and provide a littel education in the mean time without the kids even knowing it, that's not such a bad plan. Ok so we got shoes (they are finally in different sizes) and went to the play area. Tyler went up to a complete stranger (mom) on the sidelines and wanted her cinnastick. I apologized for his behavior and she goes oh it's ok can he have it. I said unfortunately no, he's on a very strict diet but thank you so much. Then later he runs up to a lady on teh otehr side (must like the chics) and tried to pull her down to play horse with him. aweweee... and super dad Steve came over and played horse with Tyler :) what a great daddy.
Have been writing this update for a couple of days, cant' seem to find enough time to complete it. Both the boys seems to have colds, runny noses, coughs, a bit whiny...usually April is their last cold of the season, hopefully this is it :)
So Tyler's new medication
The new medication is on order. The names are spironolactone and naltrexone.
Sprinolactone: This drug takes several days to take effect. It is a synthetic steroid that acts as a competitive antagonis to alosterone. Boys with autism tend to have higher than normal levels of testosterone. Strangely enough, it's also used to treat PCOS (poycustic ovarian syndrome), hey, maybe I should take it too!
Naltrexone: is an opioid receptor antagonist used primarily in teh mgmt of alcohool dependendce (whoa). As you may recall from earlier posts, the biomedical beliefs of autism that these kids cannot break downt eh toxins and proteins properly in their bodies and they they become opiate type inhibitors in the brain, making them act as if they were on opiates, this drug essentially supposed to block this type of response. Or maybe the doctor thinks ty is an alcoholic.. jk of course.
Ok, here is an intersting link to an article about the potential that autism is caused by a virus.
http://www.huffingtonpost.com/david-kirby/is-autism-associated-with_b_316986.html
P.S. Ben woke up me at 4 a.m. to tell me he was taking a really really good nap! I said, good, keep sleeping. THen of course I couldn't fall back asleep..little bugger
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