A day in the life of Tyler's parents

It seems on at any given moment on any given day, we are working on something for Tyler or thinking about what we should be doing and haven't yet. Right now we are working on a grant application to help fund some of Tyler's summer programming. Always lots of paperwork involved when it comes to Tyler! I'm also working on preparing for his AT meeting tomorrow at his school. We are both still trying to plan for his long term future as well, oh if I had a crystal ball.

His still doing spectacular in terms of his social interactino. yesterday steve and ben were playing GI Joe on the Wii and Tyler went and got a GI Joe helicopter and a GI JOe dude and brought it to Steve. He NEVER plays iwth the GI joe's.. he doesn't haev those imagination skills yet so he was communicting to Steve that hey, I know what those are, here you go. I cannot emphasize enough how happy it makes me to know that he WANTS to be social with us. There was nothing in it for Tyler for him to show Stev that stuff, he just does it because he truly enjoys the interaction. not long ago, we had to reinforce him, significantly, just to look at us! Thinka bout that..... we had to swing him or sign or give him a fun toy just to get him to look at us and now he's wanting to be around us, wanting to interact, wanting to show us he knows what's going on and wanting to be involved.

The sky is the limit for ourlittle guy!

Here's some swimming pics.. although they didn't totally capture how darn happy he was.. he had the giggles nearly the entire time.

5/24/10

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.

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

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 ;)

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