3/3/09

Tyler had a good first day back at school with the exception of his poor booty, they all felt just as bad for him as we do but said the singing really helped. I love the relationship we have with them. I had sent them an email in the mornign letting them know that he had a very sore bottom and to make sure to use the cream we sent in for him and to sing to him when you change his diaper as it helps. got a message back later in the afternoon taht the singing definetly helped. I just love how responsive they are to all of my communication.

I did remember a few of the things I forgot to mention yesterday. Someone in our family has been sick literally since the first of the year and it's been a very long time since we've all gotten out in public as a family. Ben still has a cough and Tyler still has an occasional runny nose and diarreah but in general, they are both on the road to recovery and acting normal so we decided to go out to eat as a family on Saturday. We try to go out to eat before the normal dinner hour for other people so that we aren't as disturbing. we found a local restaurant recently that has the pefect table/booth set up to accomodate all our. I'm sure people think we are loony with all teh stuff I haul around. We had a full recycleable grocery size bag as well as Steve's computer bag. We got a bit of a late start cause Tyler napped late.. we were approaching the early dinner hour so it was bit busier than usually especially towards the end. Tyler was pretty restless right away. We had brought numerous fun toys and books for him. We try to use all these things to keep him happy while we wait for our food. We also use this time to give him his dinner so that by the time our dinner comes, Tyler has eaten and gotten lots of attention so that he can watch a video while we eat. I say "usually" quite freely as I think we've only went out to eat maybe 2 times in the last 3 - 4 months with the boys and this was our third attempt using the laptop to watch videos. Anyway, Tyler was overly anxious and we had worked through our grocery bag of toys before dinner was ready so we got the laptop out... this kept him happy for about 5 minutes while we ate and then we revisited each of the toys again. All and all it was pretty successful everyone stayed happy and content. Ben was happy coloring and playing his leapster. Mom and dad had a beer! woo hoo.

Oh gosh, sorry there was a point. The owner and waitresses know that Tyler has autism and that's why we bring his own food and laptop, toys galore, etc. but obviously no one else really does. Towards the end fo the meal when it was getting busier, one family walked in the front door and as they were walking by, the dad made a comment about bringing a laptop into the restaurant. I quickly piped up and said, he has autism, it's very difficult for him to sit still, especially in a new and busy environment, the video helps keep him calm so we can have dinner out like every other family. He just said "oh" and walked away. I have no hesitation about telling anyone and everyone why we do what we do. In fact, I wish they could witness how it would go the other way and ask them if they have a preference?, i.e. Tyler without toys or video and just expected to sit still and color quietly. HA!! They'd kick us out! But it was so very nice to be able to get out as a family, finally, so for our sanity, I say, the rest of the world can kiss my ass if they don't like us having a laptop at the table!

On another note, we are looking forward to Ben getting to an age where he can start attending Sibling Workshops which are support groups for siblings of kids with autism. Ben has been outwardly telling us that he does not love Ty-Ty. He'll say, I love you so much mommmy, and i love daddy, but not Ty-Ty. I try to not draw too much attention to or tell him it's wrong, etc. I just tell him that Tyler loves him very much and I try to find ways to get Ben to see the good in Tyler, i.e. as I wrote yesterday about Tyler helping him with his letters on the laptop. I also spoke extensively with Steve about making sure we are conscience of the way we are treating Ben and our expectations of him vs. Tyler and what Ben witnesses our expectations to be, i.e. we have spent 2 years working on Tyler's eating skills and getting him to try new food and use utensils, etc. It's hard for Ben to understand why it's not ok if he occasinoally wants mamma to feed him a bite of food too. Last night I asked Ben what chair he wanted to sit in at the table (to try to make it funa nd his choice) and he pointed to the small table and said I want to sit there with mommy. I said, ok, can Ty Ty sit with us and he said yeah. Woo hoo. So I sat next to Ben and we broke all the typical Tyler rules, i.e. Tyler was able to come and go as he pleased from the table. Mostly he'd just go get a new toy and I'd grab the toy once he got close and make him "sit right" before he could play with it. For the most of dinner I paid attention to Ben, gave him lots of hugs and kisses, we watched one of his fav videos and kidn of just let Tyler do his thing. I talked to Steve later that this may be a good idea to do once a week. We spend so much time working with TYler at the table that if we maybe once in a while let Ben be the focus of dinner and let everything be his choice, we may be able to get him tot ry do eat and do new things and hopefully this will prevent some of the resentment he must feel towards Tyler. It's all a work in progress.. I found myself being short with Ben about 3 times last night and it was mostly during times that Tyler was melting down. I guess the first step is being aware that I did it, I apologized for snapping at him and now I'm gonnna really try hard not to let it happen. One of the times I was changing TY's diarreah diaper which is really tough cause he's upset cause it hurts, and has his hands everywhere and is arching his back and you try to put cream on and well it's just stressful and then there is Ben in your ear, saying mommy, mommmy, mommmy.. so I snapped at him and said, can mommmy please just have a minute to change this diaper. I did the same thing again when Tyler was upset when I got him otu of the tub and had to put cream on his bottom and Ben was having fun playign with him and I coudn't play with him until Tyler was dressed, etc. I feel like I"m always telling Ben "one minute"...

Sorry this is a long post... it's gonna get longer. I've been feeling paticularly guilty lately that we aren't doing enough for Tyler. Maybe because he's been in school now for a few months and we are kind of at a resting poitn or maybe cause he's missed so much school with breaks and illnesses, we've definetly scaled back the work we were doing at home since I'm not home with him those couple of days like I was during the study. Anyway, I feel like there is more we could do if only time nad money were not an obstacle and it had me down a little yesterday. Well yesterday after picking up Ty from school and dropping him at daycare, I went to the grocery store. I ran into a relative of a friend at the store who I hadn't seen since the boys were a few months old. She asked how things were going. I kind of told her the very summarized version of the last 3 years... she looked at me in amazement everytime i told her something new. It was kind of nice. In the world of autism, you surround yourself with people like yourself, fighting for your child's life essentially and those people are literally doing everything they can and more to help and well you kind of get used to it, it becomes the normal way of life and then seems like you aren't doing enough. It was refreshing to see my life through the eyes of an outsider as she was amazed by all we are doing and well, it just gave me a bit of peace yesterday.

So Steve and I had a long talk last night about maybe we are just a little too content right now. I am hoping that all the illness is behind us and we can start moving forward again with stuff at home. I'm gonna come up with plans for Tyler to move forward which will include new daily schedules, new play routines, new peer routines, etc. We also will be workign intensely with Steve and his mom on sign language. We are gonna get Ty more signing time videos for his bday as they are really good learnign tools for all of us and Ben likes htem too. We are gonna try to get more table time with Tyler as well and some flash cards so we can start diong more typical verbal behavior like therapy at home. Wed night is supposed to be family night where we are all together enjoying life and relaxing. I told Steve I really want this to be Ben fun night and Tyler one on one night. So Steve and I can alternate every other Wed with ben and with Tyler. Ben gets fun time and Tyler gets that intense one on one time which is so much different than we are all together. We need to act now.. he's almost 3 and we gotta push forward and do all we can at home since we can't afford much more outside help at this point. Tyler is so smart and we are lucky he learns quickly... last night we were looking at his book and he opinted to the sheep, I said sheep, and he looked at me wanting me to sigh sheep (he tries to sign it as well) and then he goes to his animal farm magnet thing and grabs the sheeps back end (it's two pieces, and he didnt' even grab the head) and brings it over and I said, yes, that's a sheep. Then he goes and grabs his animal puzzle and pulls out the sheep piece and I said yes, that's a sheep too. The cross generaliztion between pictuers and objects is fantastic! He's a fast learner. Ok brings me to another story (anyone tired of reading yet?)

I finally was able to go out to dinner with my guardian angel Amy a week ago. I've only actually met her once believe it orn ot and it was in a larger group of all new people to me. Anyway, it was great to get together with her and hear her story as she's always just helped me with mine. I had commented at one point at how many parents are so angry at autism and the situation and I said I felt lucky that Tyler had us for parents and we are fighting for him and his quality of life. BUt I also agreed that we were lucky. we always knew there was something wrong with Tyler, he never had skills and lost them, we've always been fighting for him. Many many parents have chidlren with the regressive form of autism, and that is Amy's story. Her son was fine at 18 months, saying mommy and playing and laughing and responding to his name. Within 3 months of his vaccinations, he was gone. Lost all words, was in the corner, was not responding to his name. That almost made me cry to hear her story. I CANNOT imagine having all of that and then losing it so quickly and how painful that must be. I thought about how much I adore Ben and everything that he is and what I would do if I suddently lost him 3 months from now. I'd be angry too.. I don't know if I could let go of that anger cause those parent got months and months and months of time with their normal child and had dreams and plans for them and suddently that is ripped away. Anyway, I think there is a difference. And although the kids that have the regressive form of autism seem to respond better to treatment, especially biomedical treatment, I'm glad Tyler has always had it and I hadn't endured the pain of losing him. So to that I say god bless all those parents for dealing with what they had to do deal with. did I tell you that Amy was pregnant when she got her son's diagnosis... just heart breaking. She's definetly a mother warrior and one of the most influential people who have become part of our journey.

Ok, sorry for the long post!