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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.
Tuesday, April 27, 2010
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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