3/13 - Therapy x3

So I'm behind on posting to the blog. I have no excuse except for that I've been exhausted and then we took a somewhat impromptu family trip and were gone for a bit. Here are the last 3 weeks of Aiden's therapy at Excel Rehab and working with Mrs. Rusty. As always, Mrs. Rusty keeps Aiden on his feet and guessing about what he is going to do during his time with her. The blew bubbles a few weeks ago which is often hard for Aiden because he doesn't always pucker his lips and he often blows way too hard. He did a crab walk for the first time and also learned a new way to do a frog jump. He also got to play on the zip line by walking (and trying to balance) around on a huge tube and then falling in the fall pit. There was some mini-trampoline jumping involved too which is he starting to like. He had to keep track of how many more circuits he had to do and when he got to #3, Mrs. Rusty was helping him with using his fingers to hold up three. He likes to use his thumb to pull down his pointer finger but that is the easy way to hold up the #3. Mrs. Rusty was trying to show him how to use his thumb to hold down his pinky finger to show the #3 but he has a very hard time doing that.

Last week Aiden comments on the way to therapy, "I wonder what Mrs. Rusty is going to have me do this week." I have to say, I don't think we have ever done the same thing twice there. It's quite amazing she can still come up with new stuff. There is usually an obstacle course involved but she often lets Aiden design (and build) it and it is always different. Last week she had him get enough sticks/shapes to make an 'X' and an 'O' (for tic-tac-toe) and then climb under the tent that was only about 1 foot off the ground. They then each put down their letter and he had to crawl back and get more letters/shapes. Aiden is definitely getting physically stronger using his hands and fingers and is actually starting to finally get some basic body coordination (he didn't really start jumping with two feet off the floor until after he turned 4). Mrs. Rusty has shifted a lot of his therapy towards sensory stuff and the more surfaces he comes in contact with, the better. Because of this, he does lots of crawling, tunnels, swings, etc. He is getting much better about movement (and not minding it). Bath time has been ... challenging with Aiden the past few weeks. We did a few weeks of being really patient, nurturing, and encouraging during bath time and trying to have him take control and actually clean himself. We made a certain level of progress with that but it's just so tiring. He can make bath time/shower time last 5 minutes or 45 min depending on the mood he is in. Last week, after talking with Mrs. Rusty, I decided to try a new strategy. It's much much MUCH less stressful on me but I was not sure if it was appropriate for Aiden. I felt like over the past month or so that much of our bath time is spent on negotiating and that just wears me out. Here is a typical bath time:

Me: Ok Aiden. You've got to play for 10 min but now it is time to soap up and get clean. Do you want to do soap on your body or clean your hair?

Aiden: I don't want to take a bath.

Me: I know but you've had fun playing for a bit but now we need to get clean and then you can play again.

Aiden: I want to get out now. I don't want any soap. [He often starts crying here]

Me: Ok Aiden. Do you want to do your hair or body? 

Aiden: [Cries and whines a few more protests]

Me: We will start with your body. Would you like to use the poof or washcloth?

Aiden: I just want to use no soap.

Me: You have to use soap Aiden. That is how we get clean. You can choose the yellow soap or the blue soap. Which one?

Aiden: [cries and tries to play with a toy]

This scenario continues and Aiden continues to try and evade giving an appropriate response/option which further extends bath time (and my patience). So now, before bath time, we remind him he is in control of his bath and he can make the decisions. He gets to play for 10 min and then it's time to soap up or wash his hair. I ask him what he wants to do and then I count from 5 to 0. By the time I reach 0, he knows (we remind him at the beginning of bath time and before we soap) that I get to make the decision and that no matter how much he cries or protests, it will not matter. Before we would try and accommodate him so that he would be an active participant but ... things need to change. The first night or two we did bath this way, he screamed bloody murder through the whole thing. He did not like any decision that I made (soap type, washcloth/sponge/poof, order of things, etc) but he did learn that I was still going to do it my way if he decided to not participate. Although he screamed through the whole bath/shower, it was less stressful for me because the constant negotiation was done. By the end of the second bath/shower, he made his first decision (to use a washcloth). He is not yet cleaning himself but I think we are getting closer. The last bath night we had went pretty well and he only cried through part of it. He is learning that when he makes the decisions, he has more control over his bath and he can do/not do what feels okay and not okay. 

OK. Back to therapy. Mrs. Rusty just got some lycra fabric that she has hung up to be a swing. Aiden has mixed feelings about it. He likes to swing but he doesn't like the feeling of being supported but still being able to move. He would rather just be restricted I think. We've made good progress in the world of slides. He's gone down the slide head first with Mrs. Rusty a few times and last week he even went head first down through a fabric tunnel.

This past week at therapy, Aiden got to build a house. He was so excited and he looked super cute because he just found this pair of overalls in his drawer and he has never worn a pair before (that he can remember). He had to use his fingers and hands a lot to make sure it was all connected the right way. After he was done building a house, it was time to play in the swing. The fabric was still up from last week so he had to find a way to climb in and go for a ride. Mrs. Rusty even twisted him up a few times and let him go to untwist. He had to/got to "fall" out of the swing a couple of times. He is getting SO much better at allowing this to happen. Aiden doesn't like the feeling of falling and wouldn't even fall into the ball pit a few months ago. He has never been willing to jump off anything either. He will hop off a curb but not even with two feet at a time ... until about 3 weeks ago. He has played games at home very now and then that include jumping over something and onto the bean bag but he'll only do it if Eli is doing it and he will only take 1 or 2 turns. He has recently started trying to jump off of things (nothing crazy) but he's actually trying to jump where as before, he would avoid having to jump. Even when I had him in Gymboree and he was supposed to jump off of something onto a mat ... he would never do it. PROGRESS. He is making steps forward and I am so happy for him.

We will have to start working on eating therapy again soon but I am thankful for the steps in the right direction for Aiden. He is being able to live life a little more freely and experience more. His world is so black and white and I can appreciate that because that is often how my world is. It's so different though seeing it from my point of view and also being able to see how limiting it can be. When you live in black and white and don't allow room for gray, you don't realize how limiting it truly can be. I am so grateful to God that he has placed people in our path that can help Aiden (and me) to broaden our world some.

3/2 - Bunkbed Tents!!

OK. So Brad and I took a while to do this project. Actually, I thought of the idea (tents to go around the boys' bunk beds), went on the internet and started researching (not a ton out there), told Brad about it, he came up with an idea, bought materials for it the same night, and built most of it. I had some catch-up to do. Here is Eli looking up at the partial frame that Brad built. 

After lots of researching, I decided on a plan and a type of material to use. I decided to use panels rather than a solid piece because I thought it would be too hot for Aiden for it to be a single piece and I knew he wouldn't want it that dark. I decided to completely jump in and make this as versatile as possible knowing that our boys love tents in general. I bought rip-stop nylon as the fabric because it can handle roughness, should withstand rips/tears/punctures, and can be wiped off and washed. I researched the kind of thread I would need as well as needle.

I learned that cutting rip-stop nylon is challenging because it frays so easily. I thankfully found a YouTube video that showed an alternate way to cut and finish the edges at the same time (I like saving time). I bought a saudering iron for $18 at Home Depot, found some glass to work on (the old insert for the sliding glass door for Bronco) and collected some of Brad's tools. I heated up the iron and cut the material the the sizes needed.

In the meantime, the boys were so super excited about their tents that we had to put up the frame and put something over it. We put sheets for a bit to calm them down yet still keep them pretty excited about the tents.

Just for the record - I am not a sewing expert. In fact, I would barely call myself a beginning sewer. That sounds like I have more skill than I actually do. After some research, I learn that there are different kinds of feet for sewing machines. I knew there were some special ones for zippers but that was all I knew about. Did you know there is a foot that helps keep a straight seam???? Wow. It actually looks like I can sew when I use this. It's amazing! Anyway, for strength, durability, and aesthetics, I needed to create a double hem on the perimeter. The foot to the right is the one that keeps a 1/4 in seam. :)

I needed to roll up the hem and then use plastic paper clip type things to hold it. With rip-stop nylon, you cannot use pins to hold things which makes things a bit more challenging.

Look below at the orange fabric. That looks like a legitimate hem!! Woot woot. So I did that to lots and lots of pieces of fabric.

My original plans were to make panels for each section (2 side panels and 2 end panels for the upper bunk, 2 sides and 1 end panel for the lower bunk). I wanted to there to be a little gap between the sections because I knew the boys would need ventilation and want to see some light. Below is a picture that I took from the top of the stairs of the upper bunk. You can seethe tent draping down a bit. I've also made a larger tent that covers all of the PVC and is more encapsulating but they only like to use that as a very temporary fort.

I put elastic on the corners of the tent pieces along with some velcro. Again, the idea was to make this functional beyond just the bunk bed. It's quick and easy to put up and/or take down.  I have experimented with windows to see what my boys like the best. They tend to prefer an opening rather than just a door (I think it's because they are still so young and a little scared of the dark still).

I made rectangle windows at a particular height for both of them so they can see their clock and still easily be able to see if they are allowed out of bed yet.

Each panel is roughly 35 in x 30 in. It works well for us. Some of them have no windows. I also made a huge tent (6 ft x 5ft) that has elastic at the corners but also has numerous loops along the side to help anchor it down when/where necessary. I got the idea from a product called the Fortamajig. It's a neat product (costs about $80) but is not available anywhere right now; not even from the company. That said, I looked at pictures and replicated it somewhat. I like it because you literally need just one anchor point for the tent and then that's it. I'm making pockets on the one I made so that you can just put heavy stuff in the pockets to make it stay down rather than needing stakes or anything. I haven't made a door to their big tent yet but they don't seem to care. We took the panels and connected them to around the dining room table the other night to make a fort. We took the giant tent and draped it over the living room stuff and it was super easy, it actually stayed up and didn't fall down when it was bumped (which happened with our cloth-homemade forts), and I only had one thing to fold up and put away versus lots of sheets/blankets and then clamps, pillows, and other random things to hold the ends of the blankets down. If you have any other ideas how to make this more fun, versatile, etc., please let me know.

3/2 - Big Construction Truck Day

On Feb. 16, we took the boys to the McWane Science Center for Big Construction Truck Day. Aiden tried to stop us by vomiting for a good portion of the night before but we got up and he said he felt fine. Unfortunately, I was also up all night with him and slept with him in the guest room. I was exhausted to Brad drove to Birmingham. Lots of the streets were blocked off so Brad dropped us off and then searched for parking. It was cold out ... and windy. We didn't necessarily plan for that so we were cold. We waited in line for a long time to see the really big, giant crane. Aiden did a great job waiting. Thankfully, I packed the iPad so Eli was watching something on that. Brad parked the van, walked to us, found us, and then even went back to the van for Aiden's jacket and he still didn't miss a thing. Right after he got back with Aiden's jacket though it was our turn. We went up the steps and Aiden hopped right in the seat. 

He thought it was pretty cool. He even got to press/push all the levers and stuff.

Eli just said he was cold and didn't want to sit in the drivers seat. Well, I totally acted like a mom who just spent 40 min waiting in line so I told Eli I was at least getting a picture of him by the crane. As you can see below, I did just that! Yep. He was totally having a blast. 

The boys actually got excited after seeing the huge crane because compared to the line we waited in for that, everything else had teeny lines! We went to another 3-4 machines and then Eli clearly made it known that he was done and freezing.

I did get one cute picture of Eli by one of the diggers. I tried to get him to sit in the scoop part but he didn't want anything to do with that.

Aiden was having a blast so we let him stay out there with daddy while I took Eli inside. I had on just a light long-sleeve jacket so I was pretty freezing as well.

Eli just wanted to be wheeled inside and watch Cars on the iPad. For a kid as tough and strong as he is, he sure does not like the cold. He didn't like it in Iowa (even when dressed appropriately) and he still doesn't like it. I did managed to drop the iPad and crack the screen on the very bottom. I just ordered all the parts to replace it and will be doing it myself in the next day or two. I'll let you know how that goes.

We went inside and they both wanted to go right to the kids play area and run around. We let them do that and they both played at the sand table for a while. Aiden was actually there a long time which is awesome. A few months ago he would have asked why they have a table with sand on it and a bunch of cups and then asked why people would voluntarily put their hands in it to play. We are making progress!!! The picture below is Aiden coming down the slide. Eli changed his mind about the slide and found his way back down the steps. It's nice that they are getting comfortable with this play structure because it wore me out the first couple times bringing them here and trying to keep track of them and making sure one of them was not "lost" somewhere and crying. 

We went upstairs to the new exhibit. I did not think the boys would care much for this one. It's called Grossology and if they were a couple years older, I think they would enjoy it. There were still some fun things for them to do but we were in and out of the exhibit in an hour and with the Dora/Diego and Clifford exhibits they could stay there for a few hours.  Below is Brad holding Eli playing a game where we were racing ants.

Below is Aiden trying to see the screen and race against Eli/daddy. It was a neat interaction game.

After some lunch in our belles, we decided to go to a different floor and found they had moved the Clifford exhibit. I thought it was gone but it was actually the last day. Bonus for us!!!
Brad and I tagged team and kept watch over one of the boys since they went their separate ways. Here is Eli playing music.

Eli then found his way over to the dog bone conveyer belt and had fun moving the wheel and dropping off bones in the dog dish. He even got to play on the clifford tail slide without getting run over like the last time we were at the science center.

Eventually he found his way to the mail. Aiden was obsessed with the mail and pretty much stayed there. He was actually delivering mail to the appropriate houses and mailbox throughout area. Eli just likes picking up mail and then putting it in a box.

It was about time for us to leave. I was beyond exhausted. It has been weeks since I have not taken a nap in the morning. I did take a little snooze on the ride in but I was also awake all night with Aiden so I was barely staying awake. We told the boys we could go outside and look at the construction trucks for a little bit longer. It was still cold. In fact, it was actually colder at 2:30pm than it was at 10:30am. The only good thing was that the majority of the people were gone (the exhibit of trucks ended at 4pm). There was a ladder fire truck there which wasn't there in the morning so Aiden really wanted to go in it.  He even got to pick the hose up (which is really heavy) and act like he was squirting water. As you can see, Eli wasn't all that impressed. He stood up there to let me take his picture but he got off right away.

Aiden was so proud of himself for lifting the hose and then said he wanted Papa to see his picture. We let Aiden wonder around and look at a few more trucks but Eli was just worn out.

He refused to walk anywhere and was just in a generally rotten mood. In his defense, he did great though because he LOVES his naps and he obviously didn't get one this day. I took Eli back inside and we waited (and watched the iPad) until Aiden and daddy were done looking at machines.

We got back to the van, I passed out afternoon snack and put on the requested DVD. About 10 minutes into our trip, I look back and see Eli completely passed out. He was so tired. Overall, they had lots of fun at the Science Museum for Big Construction Trucks day.

Below is a picture that I took at Cubbies. Aiden really enjoys Cubbies. It's been challenging being the director and with my health situation, I usually don't have the energy I would like to put towards it but I have great help. Aiden is riding on the back of Jessica, one of the helpers in the class. She is pretty young but does such a great job with the kids and helping us. Aiden loves her!!!

I was so exhausted this week and I could barely stay awake for Aiden's therapy session. In fact, Mrs. Rusty gave me a free pass this day. She is so awesome. She actually let me in dark room across the hall from her office, gave me a few jackets, turned on the heat, and let me sleep for 40 minutes!! It was most awesome and needed. She knows how much I like to document Aiden's progress and what he does so she even took a picture for me (see below). They were wearing masks and feeling their way around an obstacle course that Aiden built.

I try and let Aiden miss/skip nap time 2 days a week at daycare. He really .... hates it. He is allowed to play with his wipe off books, his pet stretchy lizard, or a fidget toy but in his mind - he isn't allowed to play with any of it. He is such a rule follower which I can appreciate it but it pains me to see him so miserable. He is bored out of his mind for 2 hr and 15 min, laying on a cot with his shoes on, not allowed to really even move around or turn over. The teachers tell them to "be still, no playing, no talking, etc." and he really embraces that even though he has permission to look at his book or hold his fidget toy. He is so scared of getting in trouble and also not getting a ticket (a reward system used in his class for good behavior) because he is not sleeping that he will endure a 2+hr time period of lights out, non movement. Amazing. While it sounds quite horrible to me, I will say that he does nap a few days a week so he is not laying there everyday like this but it still breaks my heart. So, I picked Aiden up around 12:30pm one day and then gave him a few options of things to do. He chose the library so we went there and picked out books. He played with this Melissa and Doug puzzle and then we talked for a long time about a poster in the library that has all the Presidents on it.

We picked out some fun books, read a few books, and then headed back to daycare at 2:00pm so I could get some work done in the afternoon. I'm staying up with my CSM classes so far but learned a hard lesson with an assignment that had too many parts to grade. OK. The next post will be about tents!!