2/24/10

Oh my goodness, sorry it's been so long since I've written in the blog, I can't seem to find the time which makes me wonder how on earth I found the time during the study.

Let's see.. both the boys had bronchitis which kept Tyler out of school for almost a week and got everyone sick but me (thank goodness); everyone seems to be on the mend now though. But we ended up having to have speech on a different day last week due to Ty being sick and it was later in the afternoon than normal; he was not enthused. Had to work really hard just to get a quiet "ah" out of him. The therapist had him sitting at a chair behind a small table which was annoying him and he kept tryign to get up. I commented on how it was the safe barrier, i.e. when Tyler is really not enthused to do "speech" he goes after her kinda. Grabbing her face or head, etc. So I asked her if anyone had ever drawn blood and she said, are you kidding? Apparently she had some twins that used to beat her up quite good, she showed me some scars. Tough line of work those speech and OT's have.. she said they don't warn you about this in college... of course she was smiling and quite fine with all of it. A while back I posted a blog saying how speech compared trying to get Tyler to talk as trying to get me to sit at a piano and play a masterpiece. It's that hard for him to do it and therefore incredibly frustrating, then when you can't verbalize your frustration with words...well sometimes the behavior can turn a bit ugly... so that happens at speech. Good thing he's so darn cute.

So on to my next thought... I had some training recently and spent a lot of time in the car. I listened to a seminar from Temple Grandin on youtube while I was driving and something she said has really stuck with me. She said to never take away an opporutinity that may be a career, embrace those interests and talents. That got me to thinking about how I prioritize everything for Tyler. oh if I could only see into the future.... Tyler loves the piano.. I started thinking in the grand scheme of things what's more important to him (not me). We can only afford so much, wishI could do more and we are constantly seeking ways to enable us to do more fore both boys but in terms of one on one therapy/lessons, it ads up! So is it more important that Tyler talks or is it more important that he has something he loves and is passionaite about that could one day be a career. So if I had to choose between speech and piano lessons, what is the best thing to do for Tyler? I feel that if he talks his life willb e far less frustrating and he'll have a better opportunity to related to peers, etc. I feel piano will make him feel comfortable, give him a sense of success and make him happier. Anyway, Temple if you do not know, has autism, she's amazing, all the list servs are buzzing about her right now because a movie just came out on HBO about her. Anway, I figure there is no one better to listen too than someone who has autism, who knows what it's like ot be that frustrated child that cannot talk, that knows how it feels to hear loud noises or be around bright lights. It's great that she can verbalize all of this for me to get a better understranding of how Tyler feels and see's the outside world. Anyway, I guess I just typed a lot about nothing, just feelings really. No right or wrong answer, just me battling with myself on a daily basis of what's best for Ty, and what's best for the family and if I'm making the right decisions.

So Ty is on break right now from school, once they start in session, they are going to start more intensely potty training Ty. The teacher says Ty is so smart that he should catch on quickly. yipeee.. can't wait to be done with diaper expenses. Ben is doing awesome although he still sometimes throws a fit about having to use the potty, it's typically in the morning. He's not a morning person by any means.

We are busy planning a birthday party for the boys. Ben wanted a gi joe party so that's what we are doing. Excited once again to have a party that incorporates both boys needs and where everyone can have fun. It will be at an inflatable place again this year but at a different place and it has a lot more fun inflatables than the last one and a separate party room. We are once again hiring someone to watch after Tyler during the party to make sure he doesn't get too curious about the mechanics of anything while we aren't looking and to make sure that he doesn't get stuck somewhere holding up lines or get overstimulated and take it out on anyone. He's been quite "floppy" lately.. I started calling him flopsie and that kinda happend at a birthday party we were at last weekend at the same place coincidentally. He just kinda flops around if he's overstimulated. So anyway there will be someone there to recognize all those things and then I'll give her tips as to how to handle each type of behavior. Gonna probably skip the gcfc cake this year as Tyler will not eat it anyway, never has. So we'll just do the normal stuff and normal snacks for everyone. Trying to relax a little about it all since Tyler rarely eats new food anyway, why spend the extra money to make special food.

Steve and I are both feeling pressure at our jobs because of our work schedule to accomodate Tyler's school, therapy, daycare, etc. Grandpa is awesome cause he comes and picks up Tyler and takes him to daycare for us every Wednesday (thanks grandpa!!) to help ease our schedules. We are lucky to have have his help. It really is amazing how much autism affects our lives, relationships, etc. We have friends that have totally given up on us over the past couple of years, family that gets frustrated with what seems like self centeredness on our part, our work gets frustrated and sometimes I feel like it's a vicious circle. Damn autism anyway. So my dream.. other than a full recovery of course, would be too have all the money in teh world to get Tyler the best of the best help and schooling, to be able to spend more time with Ben and the family as a whole, and to lessen the burden Steve feels at work. Money may be the root of all evil indeed..ha ha.. really though, I don't believe money makes people happy, however, it would make my life a lot easier. We really aren't ever able to fully accomodate anyone's needs, we just alwasy seem to get by.. in fact, it's amazing the difference just one other person makes in our life.

Was talking to Steve the other day about TYler's progres and how we feel he's slowed down a bit and we are trying to figure out if it's just a natural lull in his progression or if it's due to something more. We realized (especially after this weekend), how much we need grandma's involvement in our lives...When she's around Ben and her seem to be glued at the hip. This allows me to have uninteruppted, guilt-free time to work with Tyler and frees up Steve to get stuff done around the house, laundry, errands, etc. Grandma had been sick for quite some time and unable to be at our house or help out much until this past weekend and the differece was phenominal. She also allows us a night out as a couple with a free babysitter which is so fantastic. THANK YOU GRANDMA!!!!! We are so lucky to have such involved grandparents.

I'm just rambling on today..sorry. I'll wrap it up. SO if I could summarize the last month, it's pretty much illness, pressure, stress, financial issues, and all together just being in survival mode. I'm ready for a change. Im ready to get our family to a happier more peaceful place.. and working actively to make it happen.