06/08/10

The boys are having a great time on their new water slide/inflatable. We have such a hard time getting them to enjoy the same activity during the summer months. We usually end up taking the boys to a community pool or sprinklers or whatever during the weekends so that they can get out and have some fun and enjoy the health and good weather that summer brings and so we can too! they can be expensive, and time consuming once we pack up food for Tyler, activities to keep him engaged/sitting while we eat whever we are, and then all the normal kid stuff, diapers, snacks, drinks, towels, sunscreen, etc. We usually end up spending as much time traveling/packing as we do enjoying whatever activity we had to pay for. So this summer, we decided we'd like to spend more time enjoying life as a family/relaxing and stress free. So we got the boys this inflatable. It was a hard decision honestly but I've been feeling a lot of guilt lately about Ben, actually both boys. Man I wonder if that guilt ever goes away? Ben has been delayed in many areas and it's becoming quite apparent now that he's in a bigger preschool. His socials skills and self care skills are behind. A product of us having twins and one with autism for sure, none the less he's behind and it's hard on me, each time something happens I just feel so guilty. I know I make choices that benefit Tyler more than Ben and do so quite often. I hate that it has to be that way. Anyway, this purchase was a very non-autism gift. Ben deserves it... took a big hit that week in terms of figuring out how to pay bills but it was all worth it, look at their faces! It conveniently stores away in a small box and inflates in about 20 seconds, add a hose and voila.. hours of playtime.

oh, here's a funny about Tyler. We got to school early the other day and there is a play area opposite the hall way of his set of classrooms, so we went down there to play. There was another dad and his son playing there. At one point the dad was standing with one leg sort of over the other and his foot propped up from the ground, so jut his toes on the ground and his foot sort of resting near his other leg upright. Tyler ran by, looked at his foot, turned around, went back and then bent down and grabbed his foot and pushed it down to be flat on the ground. I quickly recognized what he was doing and told the Dad so he wasn't wondering what the heck was going on. Jeez.. didn't he know that your feet are supposed to be flat on the ground! Ha ha..

Another cool thing about Ty.. many kids don't realize until they get older that Twinkle Twinkle Little Star follows the same tune as the ABC's song. Tyler knows this... hard to explain but he has a bear that sings the ABC song and he signs twinkle twinkle when it comes on for me to sing that instead of ABC's.

We are once again research one on one music therapy for the fall. I am so happy because I learned that they begin with the piano. So I'm really hoping we can figure out a way to make that happen. We do plan to free up some monthly cash flow so this should fit right into that plan.

We haven't yet found a new pediatrician, I'm struggling with the whole DAN Doctor and whether or not we really need one and also getting recommendations from friends. I don't know how we keep having to change. The plan was we'd move to a small town, have a small town doc, and they kids would have htem til they graduated high school. oh how things are different than my grand plan! Speaking of which.

The other day, the boys were in bed and Steve and I were in the living room and I said, I just want it to be a bad dream. I want to go to sleep tonight and wake up with the life we had wanted/dreamed of. I want our boys to go to school together, to play together, to talk! To go camping, to go to the store without packing 5,000 things to keep Tyler entertained. I want to be able to provide for the boys equally and be able to save money for college fund and us for emergencies. i want to visit family more often, I want our kids to play with our kids friends... I guess I got what I wanted. When I was pregnant and put on bed rest at 26 weeks, i remember just praying that the boys would stay in long enough to have a chance at life. I should be more thankful that I got what I wanted then, things could have been way worse of course and i do have two happy and for the most part healthy boys. I really am thankful for that. It's just that autism can be so draining sometimes and to know that there isn't really an end in sight, it's just a continual fight, sigh. I feel so guilty all the time that I'm not doing enough and I hate it. And to be honest I could do more and i know it, sometimes I just don't have the energy. Last night, dinner was going so well with Ben and he was so engaged with me (and had been a bad boy at school) that I really wanted to work with him.. so Tyler ate with his fingers and I didn't' stop him. We really want Tyler to begin to use his utensils more now that he's eating by himself. Steve was at our parent support group last night, it's hard for me to attend because Tyler is usually in bed by 6:45. Oh and then Ben and I had a sort of bathroom disaster last night and I was happy Tyler was in bed, he wouldn't have had the patience to deal with it. I can completely see how it would have gone if Tyler was awake and inadvertently I would have likely yelled at Ben who never seems to stop talking in the moment of crisis which in no Way was his fault or does he deserve it. And that's what i mean about a normal life...that's how it's supposed to be. Ben and I did great, he was patient, waiting for me to drain the tub, fix the problem, fill it back up so he could bath. No crying, whining, etc. Tyler would have been so upset, not understood what was happening and certainly not been able to wait the 5 or so minutes it took for me to take care of the problem and since it was close to bedtime, he likely would be screaming in my face until I put him to bed and skipped the bath. Ben would have been whining that Tyler was hurting his ears and then acting out for attention cause me calming Tyler would have been my activity at the moment. Ugh. For all of you who say it's like that when you have multiple kids, I don't believe you., or at least I can guarantee you it's not the same. I've seen my friends who have multiple kids and it's not even close to the same. You'd be amazed at how much just the concept of waiting can cause issues in our house. Or the fear I have that at any moment Tyler could walk out a door and I'd never see him again, he couldn't tell anyone who he was or what he was doing. Definitely my biggest fear. We were at friends recently and a babysitter was there because we were all going to a Detroit tigers game (I got free tickets thru work) and they have a huge house. Plan was for the sitter to watch our kids there, they have a 2 and a 5 year old girl nd then our boys. The house is 3 levels with numerous doors and I was not comfortable with Tyler having a run of hte house, so they had to move everything for their kids downstairs so that the sitter had one floor to watch the kids/doors. That's what i mean about it not being the same. One of their children was younger than ours but they had no worries at all about their kids taking off or being in far off places of the house without worrying to what they were doing. I can't imagine that for Tyler, we have gates, locks, etc. everywhere. Too many stories of kids with autism lost in the woods in the middle of winter or in the swamp or wherever. They don't understand to ask for help or they can't talk at all or they don't realize they are in danger.

There was a night a week or two ago we had friends over for dinner. Tyler hasn't seen them in a long time, i.e. no way could he remember them. The kids ate first as they were getting hungry and our food wasn't ready. After dinner, the adults were sitting at the table wrapping up and Tyler went up to the guy (pete) who's a big guy! And grabbed his hand so pete said, what's up dude. Then tyler pulled on him, so I said he wants you to go with him, so once Pete stood up, Tyler put his arms up, I said, he wants you to pick him up and take him to bed. Pete goes, really? I said, yup! So cute!!!! So he took him to bed and all was well. It was really so sweet.

As for the Assistive Technology Plan, it isn't finalized yet, still in the planning stages after our 2 hour mtg, but hope to wrap it up before the end of the school year for sure and have something in place moving forward for next year. I'll keep you posted.