07-28-08

So I have so much to say since it's been a while since I've updated the blog. I'll start by giving a huge thanks to Aunt Susie, Uncle Kurt and Justin as well as anyone else that helped care for the boys this past week while Steve and I took a much needed vacation. There was a lot of preparation involved in regards to packing for Tyler because we needed to include not only the normal items but also his food, medicine, dishes, soap, sponge, etc. Literally everything but the kitchen sink :) However, the boys both did fantastic. Everyone commented on what a difference there is in Tyler between last fall and now, almost unbelievable they say. Thank goodness.. That kind of feedback is music to my ears because by no means is any of it easy.. which brings me to my next point. Remember when I quoted a saying a few weeks ago about the rainbows along the way of tough journeys.

My last blog mentioned the fact that I hurt my back a couple of weekends ago. It's still not 100% but getting better each day and I'm very conscience about the way I move around, however, having 2 2 year old's and one that requires a lot of physical support can be very hard on someones recovering back. So vacation was great. We picked up the boys and had a long weekend to spend together as a family. It seems that life wanted to send us a sharp reminder of just how difficult our journey can be at any given moment. Somehow mom caught a cold while on vacation but wasn't slowing me down much. Ben had a runny nose and other than being a bit on the whiny side (which he can tend to me anyway) he was doing ok. Tyler was acting different, however, we anticipated some regression since we had been away and he was in a strange place and we weren't around. we tried to set up as much supports as possible (i.e. prepare him with pictures, talks, familiar items) but we knew it would be an adjustment getting back into real life so we decided not to push him to far this weekend.

Sharp Reminder #1: We went for a walk as a family on Friday night. we've done this often and we take Clifford with us. There are a few areas that Tyler sometimes struggles with so we have supports in place to get through those areas and in general he does pretty good. This night though, no one was all that enthused about going for a walk except for Clifford! we got to the end of the driveway and Tyler was refusing to walk, he does this kick up his feet as to fall to the ground on his knees. If you let him then he will bang his head forward on the concrete which obviously I can't let happen. So we used all of our tips to get him moving.. bouncing him up and down (ouch back), stopping and taking a break and counting, swinging him between parents. Stopping and actually playing on the sidewalk with a ball for a break. All this happened within the first 20 feet of the walk. we were stopping about every 5 feet to give him a break from moving forward.. again (ouch back) because there are continual lift ups, lift downs, putting my hand down to prevent him from banging his head, lots of happy praises when he's doing well. Poor Ben was standing with Daddy and Clifford and wondering why on earth he had to come on this walk that he didn't want to go on, if we weren't actually going to walk. I'm sure Clifford was thinking the same thing, they were so patient. A neighbor had a guest arrived who comment on our "picnic" in the middle of the sidewalk. I began to think to myself...if they only knew.. If they only knew that if we didn't do all these things, my son would very likely hit his head so hard on the concrete that it would split open. If they only knew... I'm sure even in all that they know about autism, they have no idea the supports that you have to put into day to day life just get through it safely. Anyway, we shortened our walk to the small circle and about half way through Tyler was hysterically screaming, I was being very patient and waiting with him talking to him about his feelings and knowing that the neighbors must be wondering what on gods green earth is wrong with that child. I realized that no matter what I did to support Tyler he just wasn't wanting any part of the walk so I picked him up and swung him around in circles the rest of the way home which managed to get some giggles out of him. Once we got home we got some juice which is what Ben wanted the entire walk and then we went upstairs to play which I think is what Tyler wanted before we went outside and what caused his resistance to the walk in the first place.

Sharp Reminder #2: We took the boys to MacDonald's late morning one day so they could play in the playland. We had packed a lunch for Tyler and had brought in a few supports in case he wasn't happy about play time. Ben had been there before so he knew right where to go and what to do. Tyler hadn't been there before but it's similar to the tree house that he has frequented. Oddly enough, Tyler climbed right into the highchair so I figured he must be hungry (he never wants to eat!!) so I fed him his lunch a little early while Ben and Dad played. Then Dad and I ate while Tyler was climbing around the playland with other kids, yeah! Ben also decided it was time to eat his nuggets, it was kind of nice getting them to eat in shifts. There came a point that Tyler kept trying to leave the room so we got out some of his balls to play with, Ben was still eating at this point. Some girls wanted to play with the balls and Tyler and dad was supervising and said he didn't think it was a good idea as Tyler wasn't interested in sharing. Soon after Steve and I talked about ways he could have incorporated the girls into Tyler's play which would have helped Tyler too. The girls were old enough to understand Tyler was different. In fact, it didn't take long and I'm sure most of the parents in there realized Tyler was different. One couple was shocked to hear they were twins since I was hand feeding Tyler (lots of support eating in a new place) and he doesn't talk at all where Ben is running around speaking in sentences and feeding himself, playing with kids, etc. There came a point where the balls were frustrating Tyler so he went to bang his head on the floor so we dove forward to stop him and talked him through it but everyone for sure knew at that point that something was going on. We had been having trouble with diaper changes since vacation so we decided to change the boys in the van so it would be more familiar than MacDonald's and it was time to leave. Ben and dad went out first to put the seat down in the van. You can't go outside with Tyler and not have both hands available to make sur ehe doesn't run in front of a car. So then Tyler and I left and diaper change was awful. Again, we put all supports in place, we gave him toys, we sang, we let him up to give him breaks, etc. and he was very resistant to it, screaming and writhing with the strength of a 200 lb man. we got Ben into dad's car, mom was leaving after to do grocery shopping while boys go home to nap, and we both worked on Tyler and after about 5 minutes we finally got him changed..lots of tears and sweat! Then I went to get him in the car seat and give Ben and a kiss and poor Ben was crying because he seat belt was bothering him. when I got to the store I read a story about a mom who was having to institutionalize her son because he was just getting violent with family members, including little ones. It broke my heart and I will admit I cried. I had just had a 10 minute struggle with a 25 lb 2 year old, I can't imagine that struggle with him as a teenager. I just wouldn't be able to physically do it. So I hoped beyond hope that we are making all the right choices and that Tyler would never have such strong behaviors and that I would never be in a situation to have to make such choices.

Sharp Reminder #3: Sunday late afternoon we decided to take a drive. I needed gas and wanted to show Steve where the running trail was in case I ever decided to do the long run again. we did those things and when we got home, Steve sat Tyler down and I was about to go make dinner (which we had cooked many meals in advance while the boys were napping that day) so by making dinner I really mean just heating up. Anyway, Tyler reached is arms up and just looked sick. So I picked him up and sat in the chair and held him, he was very hot and lethargic and wouldn't even sit up. I told Steve he was going to have to handle dinner and Ben because Tyler just needed to be held. Steve was great, he actually hand fed me my dinner, awe.. So anyway, he and Ben went to take Clifford for a walk I was going to make some phone calls about Tyler's appts. today. Tyler could very well have his own calendar. This is a very busy week for him. Today was the standard speech therapy at 8:30 and then Occupational therapy at10:15. So i left a message that we'd be cancelling and then left a message with work that I would not be in the morning. I had previously asked Steve to get me a bowl in case Tyler vomits...like father like son, Tyler has a very weak stomach when he's ill. Ben later decided to play with the bowl. Tyler stayed on my lap watching videos until they came back. I told Steve I needed to change his diaper and then we needed to take his temperature. Taking his temperature takes 2 people because he hates his ears to be touched, but with the way diaper change was going, I didn't dare take a rectal reading. So that didn't go so well when Steve and I were "discussing" that it didn't work, Tyler vomited all over my himself and me. So he and I went to the bathroom stripped off our clothes, I washed his hands and face, etc. Steve took the dog outside becuase he was trying to eat the vomit and kept Ben occupied while he cleaned up. I took Tyler upstairs to get new clothes and change my shirt and sat in the chair with him until dad put Ben to bed. Steve double layered Tyler's bed in case he vomited again so we could just strip off the bedding. I rocked him to sleep and we laid him down and hoped that he'd sleep and feel better. Then we discussed how on earth we were going to accomplish everything this week. For immediate reasons we decided we'd split Monday and each take 1/2 day so we could care for him. Oh, and the dog decided to vomit on my shift, lovely! why is it always the moms who get puked on!

Tyler had the missed appts. from today which would be impossible to make up. He has his normal appt. with Carrie on Tuesday and then our parent fidelity taping right after. Normally it wouldn't be a big deal to reschedule but we missed all of last week because of vacation, the previous week because of my back and this is the last week of the study so we have to do a taping this week. But even if Tyler was feeling better, he certainly would not be 100% and I didn't want that to be the last taping they have of him plus he needs to rest and not be pushed too much. So Carrie and I talked and she's gonna do more of a general consult/discussion this week and we moved the videotaping to Saturday which is perfect because Ben is going to the zoo at Grandma's with dad and grandma so Tyler and I will have the place to ourselves. Wednesday Tyler has an appt. with the DAN doctor to review the results of his urine test and discuss current supplments and next steps. After that meeting I'll update you with all that supplements he's on now since I know we'll be adding more. Thursday he has his normal speech therapy and then the community visit with Carrie and then Friday he is doing that ADOS-T training session at U of M to help everyone learn how to administer the ADOS-T which is an amazing new tool in the autism community and will help standardize testing in toddlers to allow for earlier diagnosis and access to treatment. Anyway, as you can tell, not the best week for him to be sick let alone for us to miss more work since we were both on vacation last week.

Which brings me to the rainbows. Yes the journey is a struggle and I will never try to sugarcoat it and make it sound glorious or easy because it isn't. However, in the midst of the crazy weekend, Tyler has been amazingly talkative. He's verbalizing a lot and really concentrating on your mouth when you talk to him. He approximated words for Horse and Swing to me this weekend. He also signed swing and all done which he doesn' t usually do on a routine basis. He came up to Ben and hugged him all on his own when Ben was upset. His receptive language is amazing. He showed me he knew his colors this weekend as I would ask him to touch a certain color on the ball. I also do this to the animals on his book that he doesn't have me label for him(he has certain favorites) so I know he's retaining a lot since I rarely tell him the names of those animals. He's feeling much better today and since Ben wanted to shower with Daddy I had a chance to work with Tyler one on one in the bathtub and we've added more complex tasks to that routine as well. we've begun to label is bathtub letters and shapes, we practices putting toys in and out of the boat and sang new songs to get him clapping. There was maybe a total of 2 minutes that he wasn't engaged with me out of all of bath time which is very very good for him. I usually struggle to compete with the water.

And I can't even begin to tell you how amazing Ben is. Let's see.. this weekend he told daddy to "finish your lunch" "wake up daddy" "I missed you mommy and daddy". He also told me he needed to go on the potty chair and we sang "plop, plop, fizz, fizz" while he went pee like a big boy on the chair. He's getting really good at going potty like a big boy. There were a million other adorable things that makes you want to squeeze and love on him forever. we had lots of snuggle time tonight after bath/shower time.

Although life throws many harsh reminders our way as to just how stressful the journey can be, it also blesses us with rainbows along the way to gently remind us that we are doing all the right things and have two beautiful boys and a group of people who support us through it all. Next week starts a new chapter in our life, new medicine from the DAN protocol, a new segment of the study and hopefully new breakthroughs.

Love to everyone!