10/29/09

Here is Tyler's latest masterpiece. I actually had a hard time making dinner last night because I kept wanting to go watch/listen to Tyler play. Ben was upstairs playing GI Joe's.. he's really starting to like GI Joe's and Star Wars. on Saturday, Steve and Ben went to Steve's friends to play with his kids and they all played Wii. Ben had a ball.

Compared to a year ago, Tyler is just so much more chatty and so much more aware. I guess if i could say the percentage of the dya that we have Tyler in our world and not lost in his own world is about 95% now. I feel like he's with us most of the time and wants to engage with us most of hte time. It's become a ritual that whenever I'm cooking, Tyler brings me his foam letters and we play that game. It takes a bit longer to get dinner together, but it's so much fun to play with him and get him to make different sounds, etc. I captured this video this morning on the way to school. he's just chatting away to me and what's so fun is how happy it makes him to interact.

Ok that's all for today, busy week but wanted to get the video's out there.

10/27/09

Speech went great yesterday for Ty! I was so proud of him. Here are some videos:

He was super talkative right away and he really working hard to do what she wants him to do. He's beginning to make his lips form in a certain shape on his own when she asks, like if she makes the "ba" sound, you can see him really watching her lips and then trying to imitate her. Speech also commented on how Tyler always holds her to her word. She'll say he has to do somethign 3 times, and then when he gets to the last time she'll say one more tmie and then sometimes tries to get more.. Tyler doesn't let her get away with that, he's like seriously? You said one more time! Sometimes he even looks at me like Help mom.. I'm supposed to be done!


Tyler has a bunch of large foam letters and he really likes to bring them to you and then you say the sound and then throw it and he goes and gets it and brings it back to you. We make him say the sound once or twice before we throw it so he has to work for each one. Anyway, he sort of invented his own augmentive communication device. He has a leap frog letter drawing pad and when he picks out a foam letter, he'll push that letter on his drawing pad where it will tell him the letter and how to draw it. Then he brings it to us.



Both boys are doing very well with potty training, other than when sleeping, Ben has had a dry diaper since Saturday afternoon. Tyler has went potty a few times on the potty (we are following the schools program) and does a great job of sitting on the potty for 30 second at a time without having to be held in place. He loves to flush:)

Really busy this week so not a lot of time for updates but just wanted to get those videos out there.. I have more to share, maybe more later this week when I have a bit more time.

10/22/09

Tyler and I had a little conversation today, it was so much fun. We were on the way to school and he was int eh back making "ahya" sounds so I looked in the rear view mirror and started repeating back the sounds he said, then I'd stop and he'd start saying them again, then he'd stop and I'd start. He thought this was so fun, he was smiling the whole time. I thought I'd give it at try with a new sound and see if he'd make that sound that I made too. So I started with "ba ba ba ba ba ba" and then he went "baa baaa baaa baaa".. it was so cool! We continued talking for a good 5 mins.I wanted to take advantage of his relaxed state and keep him taklign ot me. Carol (speecH) says that when he tries to talk, it's really really hard for him, that's why he grits his teeth alot, he's trying to force it out. when it comes naturally and he doesn't have to think about it, it's much easier for him so it was great to talk to him. Which reminds me, he did something really cool at speech on Monday too. I wasn't able to video it unfortunately but he wanted to spin cups, she had a stack of htem, so in order to get the cups, he'd have to make sounds. He got to the point where he was just running up to her and going "ah, ah" he had to do it twice for each cup, he didnt' need any prompting he was just doing what he needed to do, TALK, to get what he wanted. I love him. Ok here is the video of TYler and the piano. i kinda caught these after he'd been playing for a while so his interest is kinda of lacking towards the end but you can see how interested he is in each keys and their sounds. In fact he was pointing to the key as if to ask me to label it so I started telling him the notes for each key. Anyway, here are those videos.
Oh, that reminds me, we've begun somethign new at home. Tyler often points to objects in books for you to tell him what they are, and he often points to objects in real life for you to tell him the color (how I know this is what he's lookin gfor is that once I tell him teh color, he's satisfied with my answer, if he's not satisfied, he'll keep touching the object until you tell him what he's looking for) but he rarely if ever points to objects in real life for yuo to tell him what the name of the object is (unless in book). So we've begun making a bigger effort to name all kinds of things for him. Yesterday we did this in the kitchen whiel I was making dinner, we talked about the lights, refridgerator, dishwasher, coffee pot, sink, faucet, table, and chair. He really liked this new game. He's like sponge.. I am so intrigued by him and his mind sometimes. I just find him to be a fascinating little person.

10/21/09

So I just had one of those moments where someone who doesn't really know much about us other than the fact taht Tyler has autism was asking me a bunch of questions. I was answering all the questions and finally he goes "wow, you guys are really doing a lot"... I'm like yeah, I guess we are :) It felt great, it was just this past Monday where frankly I was feeling pretty shitty about everything.. literally everything. Kinda felt like I wasn't making anyone happy so I was just gonna ship off into no mans land and live on a beach and catch fish for the rest of my life, ha.. ok I wouldn't really do it, however, the thought brought me a bit of peace:)So let's see.. the final straw on my shitty day Monday was when we were leaving speech. Tyler worked really hard and he gose to speech right from school so it's 3 p.m. by the time we leave and he's tired. I picked him up and speech had told Tyler to say goodbye. I told her he waved his hand and then she goes, let's use your lips and grabbed his lips to get him to make the "ba" shape. I made a joke to Tyler about her being relentless and she commented back, If Mommy were a little more relentless, we'd move a lot quicker"... I had swallow hard to hold back tears. I know she's right, I cuold do more, and I have the knowledge to do more for Tyler, I just don't have the time, Sometimes I don't even have time to pay bills, have needed to do that since Friday. My cell is broken and not charging properly for over a week and a half and I haven't had time to take it in so I'm constantly shutting it off and taking out the battery so I can be sure to have power when i the car with the boys. I also was just talking to Steve this weekend about possibly getting a second job at like whole foods or something to not only get discounted food prices for Ty but to also make some extra cash. Anyway, I just struggle with finding the right balance sometimes, Steve wants a wife, Ben wants a mommy, Tyler needs a mommy and a therapist, we are implementing 2 new software programs into the fire department and friends need me, family wants to talk and hear from me, sometimes I wish there were 48 hours in a day... then maybe I could make everyone happy, including myself. none the less.. that was my problem on Monday.

However, although I can't necessarily explain all the details just yet, we had some very positive movement yesterday afteroon which totally turned my mood around. More details to come soon but hopefully we have some solutions for our crazy schedule, etc. soon.


Also, news on the potty training front. School has begun charting Tyler's wet/dry diapers at school and follows their potty training program which we are also implementing at home. he actually has went potty once at school. Steve shared the plan with daycare yesterday and when Steve got there, Ty went potty on the potty and got really excited about it. Which as I had expected, got Ben jealous about the attention Tyler was getting and then he wanted to go on the potty the rest of the day too. There may be hope for us yet :)

A few weeks ago, my aunt took the boys for the weekend so we could do some home improvements, including re-doing the boys rooms. They are so cute now. Both boys are now in big boy beds which made me incredibly nervous about Ty but he's doing great. We put a child lock handle on the inside of the door so he can't get out on his own, fears of him roaming the streets in the middle of the night! Anyway, Tyler has a transportation themed room, we found them a train table on craigs list and have some homas trains in there and then planes, trucks, trains, etc. decorating the room. Of course Ben's room has a dinosaur theme. He actually has a new twin bed, we gave Tyler, Ben's toddler bed. Ben really wanted a volcano in his room so we got him a lava lamp. We were able to find sheets that matched the purple walls so we didn't have to repaint and we made some other accents in there to ty in the purple in a non girly way. We are still waiting for his dinosaur wallies to come in to make a bit better. We also re-did their bathroom upstairs, made it more kid like. SOOOOO CUTE. THey are loving their new rooms.

Oh I digress.... the point was that my aunt has a piano and I got an email that Saturday a.m. asking how long she should let Tyler play the piano cause he just loves it and didn't want to stop playing. I said, let him play as long as he wants. I know he loves music and his little baby piano and we had already planned on getting him a bigger piano for christmas and getting him into music therapy at autism collaborative center. Anyway, so excited because one of the assistant chief's daughters had an old electronic keyboard/piano with a stand that she wasn't using anymore so she happily volunteered to give it to us :) We are gonna give it to Tyler tonight, I cannot wait for him to see it. hopefully he naps today so he can play for a long time. Plus it's family movie night and he won't be intersted in that so it's perfect activity for him, yeah! which brings me to my next point... there was a story on NPR recently about a man who was diagnosed with aspergers at age 45. http://www.npr.org/templates/story/story.php?storyId=113744905&sc=emaf He's a musician and a professor, his son also has aspergers which is actually how dad got diagnosed. Anyway, at the beginning of the clip (audio) they talk about a piece of music and actually play the music (can't remember musician's name) and it sounds very similar to teh music structure that Tyler plays on his little baby piano. Listen to the clip should be in first 3 mins or so and then go back int he blog and listen to the clip of Tyler playing his little baby piano.. very similar. I'm so excited to possibly have a bridge from Tyler's world into ours via music. Also very excvited that we caught Tyler's autism so early and get him involved in all tyopes of therapy including socialization so that maybe he doesn't have to face so many challenges in life. Just love that little guy to bits and pieces.

Oh and tyler now gives kisses upon demand.. soooo cute, he's become a really great hugger too. And the cutest thing.. when I put Ben to bed last night I gave him a kiss and a hug and I said thanks for the lovin'.. he goes tomorrow when I wake up, I'm gonna give you some giant lovin'.... so cute.

Ok, we are all set to be the wizard of oz group for halloween. Ben is scarecrow, Tyler is cowardly lion, steve is Tinman, grandma is wicked witch and I'm dorothy. Ben is really excited. Ty's not so fond of his costume so we are strategizing abuot ways to get him comfy in it. We are gonnna put it on an doff a few times, it's scratchy so we are gonna put some long sleeve under shirts and pants underneath and hope that helps.

I'm sure I'm forgetting many things since it's been so long but for now at least you have an update :)

10/9/09 1 out of 91

wow.. I cannot believe how fast time is going by, I'm just not finding time right now to update the blog which means I sometimes forget so many good things to tell you. First things first..we've begun potty training Tyler based no the method the school uses which first means potty charting. Tyler actually did go potty on the toilet at school the week before last, yeah! They following the method of an expert at U of M who is also doing a seminar at teh school later this month so Steve is gonna go to that so we can get up to speed on everything we need to do to get Ty potty trained and hopefully it will work for Ben too. They'll be 4 years old in 6 months! Tyler did very well at speech this week, I'm always amazed at how much he's willing to tolerate there. We got him to say "up" a few times. Kinda hard to explain and since I was involved I coulnd't video it but basically he lays down, head in my lap and then she pushes on his chest, he starts to make noise, I make sure to keep it in his throat (not his nose) so when air starts coming out his nose, I plug it and it goes back into his mouth. The only sounds we make through our nasal airways are "mmmmm" and "nnnnn" so we want to encurage the air/sound to come out. He also has a habit of making sounds iwth the make of his throat and we are showing him how to move those sounds to the front of his mouth. So ok, she pushes on his chest, sounsd come from the back of his mouth, once he is used to doing this, then we start moving his chin up and down and he'll start making new sounds. I did have one video of her workign with him on the couch, basically you just get to see him pick his nose.. ha! Both boys have had colds off and on since Ty started school and we pinch his nose closed a lot during speech and it tickles him.


http://www.medicalhomeinfo.org/health/Autism%20downloads/AutismOct5parenthandout.pdf This link will take you to an article about autism from the american academy of pediatrics which indicates that in the US, the statistic is now 1 out of every 91 children have autism. Used to be 1 out of 150. So so so so scary.. It is so damn frustrating that it is that prevalent and the statics as seen in this article are that 3 - 25% of children can improve so signifcantly with treatment that they no longer fit the diagnosis and yet insurance does not cover hardly anything. We just received our official "denial" that in our insurance will not pay for Tyler's speech therapy which costs us $320 a month for essentially 4 hours a month (1 per week). It just is so frustrating. If I had my way, Ty would be in school until early afternoon, then have 2 hours of speech, then work with a behavior analyst for the rest of his day, eating, etc. until bedtime. Yeah, a lot of work but the thing is.. Tyler wants to work, he wants to learn, he's so super smart. He brings me his flashcards all the time which he could easily look at himself, he knows how to open them but he wants me to work with him, I make him make sounds to get each card and we work on different sounds. We've been focusing more on sounds lately than signs.

Anyway, we are going to add music therapy soon, the autism collarboration center at EMU will he having a music program added soon, in fact I think Amy said they are shooting for monday afternoons so we hope to rush him off to music therapy after speech. http://www.annarbor.com/news/like-many-parents-kelly-van/ One of the littel girls in the picture/article (gillian) goes to Tyler's school and also was in splash camp with him this summer. It's amazing how large yet small the autism community is once you get into it. Everyone tries to help everyone else, it's truly amazing how many people have helped us get to where we are.