The good stuff

I think I spend a lot of time talking about how hard and exhausting this whole journey is. And that's definitely true - this is by far one of the most challenging periods of my life. But there are a lot of good things happening around here that are worth mentioning:

1) B man has been sleeping through the night. After a 5-day stretch where it seemed like he was falling back into his old pattern of waking for a couple of hours every night, he has been consistently sleeping for 11 hours or so every night and even napping periodically.

2) Big bro. has been accident-free for almost a week. We saw a digression in potty habits when we started B's therapy. I didn't make the connection but our team did and implemented some strategies. Simple stuff - rewarding him with the EXACT same kind of rewards that B gets (who knew that he wanted to be spun around and tickled too) and not giving him any attention (even negative) when he does have an accident. We haven't had to do the second part because his accidents stopped as soon as we started the new re-enforcement.

3) B has pretty much abandoned his "clutching" behavior after just 1 tough weekend. It's amazing.

4) Transitioning my firstborn to preschool has been nothing but a positive non-event around here. He loves it and I love what it is doing for him.

5) We have a PCA now and hubby and I are instituting a weekly date night. This is sooooo needed and long overdue.

6) Halloween was a success. Both boys wore costumes and there were no meltdowns. We were out for a full hour. B didn't get into it but he wasn't unhappy and handled it very well. Last year, he was pretty traumatized by the whole thing.

7) The obvious one - B is doing great with his therapy and despite all the hard work and sacrifice, it feels right.

8) There are more good days than bad.

I was going to do a top 10 but that exhaustion thing is getting the better of me. More to come, I'm sure...

Time off

Today was our weekly review meeting. Brady's week last week consisted of FIFTY EIGHT hours of therapy (17 of that from Doug and I). Crazy. He had a great week. The results seemed slightly diluted by the fact that he had such a banner week the week before. But we certainly have nothing to complain about. It was a really tough weekend removing his "clutchables" but he seems to have pretty much abandoned that behavior in only a few days time. It's amazing - this stuff really works. One highlight: we had a goal of 1 vocal imitation (word or approximation) per session and he averaged SIX.

Now we even have a couple of objectives for big brother that will make life easier for all of us (example - having him play independently when I need him to vs. when he feels like it). It'll be interesting to see how it works on him - in some ways, he is the tougher nut to crack.

We're still feeling pretty worn down around here though. Our PCA has been hired but we have to wait for a cleared background check so it will be next week or the following before we get any relief there. One of our therapists has pneumonia so we ended up with a couple of "free" hours today. So strange - it was literally only from 2:30 - 5 and it felt like a really long time. It's amazing what you get used to. Earlier today, our senior therapist asked if I was under the weather and then suggested we take tomorrow morning off from my parent training. I guess it's obvious that I'm worn out. So tomorrow I will have 2.5 hours while big brother is in school. I will have to be home for all but an hour of it but I assure you that I can think of many, many ways to fill my time. And I'm looking forward to it. I can guarantee that I will not make near the dent in my list that I think I can.

Tough love and spunk

I think I mentioned this in my earlier post - there is a lot of tough love going on here these days. A few examples: the most obvious one, of course, is the fact that B is now in therapy practically all of his waking moments and is not allowed to just do what he wants to do. Then there were the trains that we dramatically limited. And his favorite videos. And limiting his snacks to a schedule and only at the table. There is the tantrum/crying behaviors that we not only ignore but completely walk away from and deny all physical attention. The pacifier is only allowed when he sleeps. And now there's a new one. B man likes to "clutch" something in his hand. Most of the time it's a toy but not always. We define it as holding something and carrying it around without it having a purpose. It's one of his autism traits. He had stopped doing this for a while but now it's back in full force. So, guess what? We're going to try to "replace" it with more purposeful play. This is twofold: we are spending more time teaching him to play appropriately and taking away the "clutchables" whenever he has one.  I literally have filled 2 quart-sized bags with these things in the last 2 days and put countless others out of reach or locked up.

He's not happy about it. So here comes the spunk part. Since the beginning of his therapy, he has been letting us know that he's not loving how much we're messing with him. He started pretty typically with crying and whining. Then he started to knock things over or dump things out. When that didn't get enough of a reaction, he looked for LOUDER things. And most recently, he has started closing doors. He will sometimes put himself INSIDE the door and sometimes me or the therapist, closing the door behind him. Yesterday, he even managed to lock himself in my bathroom (that was a fun panic attack for me). He has gone to all new lengths now that we keep removing whatever he is currently holding and attached to. He tried everything to avoid me when I worked with him this morning. He would shove me into a room and close the door or just run whenever he saw me coming. He tried to climb UP his bookshelves to get some of his coveted items. He learned how to remove the safety locks on his cabinets and starting pilfering through. He even brought me a bag of fruit snacks he found in there. It's pretty interesting to watch. He is like an addict looking for a fix - continuously searching and substituting whatever he can find. Hopefully in time, this will lose its appeal. In the meantime, it's pretty difficult. However, there is no denying that this kid has spunk and definitely is no dummy. He is using some pretty smart problem-solving skills. I have a very strong feeling that his IQ scores are going to soar as we move forward - there is NO way that he is as developmentally behind as his initial testing indicated. NO WAY.

Mommy meltdown

B had a decently good day yesterday. This was his schedule: awake at 6:30 (unusually early for him), therapy from 8-11, 11:30 - 3, 3-6:30 and therapy/training with Dad from 6-7. He was cruising along pretty well with minimal complaints. Around 4:30, he came over to me and wanted to be picked up. He was on a short break with his therapist and I was in the middle of going over some paperwork with our soon-to-be PCA. I couldn't quite tell what he wanted so I put him in his bed which usually is good chill time for him. A minute later, I checked on him and he was asleep SITTING UP in his crib. Poor little dude just couldn't stay awake any longer. He slept for an hour amongst a LOT of loud activity in the house, with an open door. And when he woke up, let's just say he was cranky.  At that point, it was past his dinner time, he was totally thrown off from a schedule standpoint and there were 2 therapists, 2 grandparents, 2 parents and a big brother all in his house. I could keep him calm by rocking and singing but when I tried to get him to do anything like eating, he just couldn't get it together. I tried a quick walk around the block but he was devastated when it was over. When he finally sat at the table to eat yogurt (a favorite), the grandparents, big brother and I took our dinner and went down to the basement for a very bizarre picnic of sorts. Shortly thereafter is when I lost it. I could hear him crying and just so upset and I knew he just wanted to be done. When either of my kids have done the late nap thing, we've generally kept it very low-key until they are ready to re-enter the land of the living. He wasn't being given that option. And for the first time, it just felt mean. We're doing a lot of tough love around here. It's not easy but it's easy to see how it is what is best for him in the long run. And that's enough to keep going. But last night was too much. I'm not sure you could find any kid (autism or not) who could just roll with that situation. I cried while he cried and I have never been so happy to see a session end. And they did end a little early. I was able to scoop him up once he'd had a short period of calm.

To our team's credit, they immediately proactively came up with a plan to address this. We're going to try really hard to give him a nap twice a week AND give him mom time after rather than launching him right into therapy. We'll see how it goes. Now, even more so, I have no doubt that this is the right therapy for him and that we have the right team. Add to that a supportive, wonderful hubby and family and we'll get through this... hopefully with fewer meltdowns all around.

We also had our weekly review meeting this morning. It's hard to assess how everything is going while it's happening so I very much appreciate the extreme quantity and quality of data we get. He had a phenomenal week. FIFTY ONE total hours of therapy (this includes mom/dad time), 92% success on his objectives, an increase in his rate of acquisition of new skills from 4.3 to 5.5 and a whole lot of really positive numbers but I will try not to bore with the details. The sum of it is - he's getting it. We're even introducing a vocal objective this week.

Another one of those days

A little longer in between posts than usual. Just when you think it can't get any busier, it does. My parents have been here this past week. They are a HUGE help and it has been so awesome that they've taken big brother out and taken care of kids and household duties for me. Yet somehow, I've managed to more than fill the time. There is a lot to do with funding (classes, meetings, calls), volunteering at school, observing another family, parent orientation and training, training, training, parent therapy, parent therapy, parent therapy. Rinse. Repeat.

On the whole, B has been doing awesome. He is working pretty much from 8 am until 6 pm almost every day. Whew. We're fading naps, putting more restrictions on him, more demands and the list goes on. I'd say he's taking it in stride more than most people would - myself included. But today has been one of those days. LOTS of crying and lots of time lost. I sat in the basement with 3 therapists for what seemed like a lifetime this morning while we waited for him to calm down in his bed. This is the part that really sucks. Thank goodness the good days by far outnumber the bad ones. And he really is making some serious progress. Today, he had a really good night's sleep, was up with some downtime before therapy started, ate a big breakfast and should have been in great shape. Yesterday, he came off a really bad night's sleep, was literally pulled out of bed after the therapists arrived AND it was Monday. Yesterday was awesome and today is terrible. I should have learned a long time ago that you can't manipulate this whole parenting gig.

I took a break in between writing this - I seem to never complete an entire task uninterrupted. And, B is doing great again. The day is looking up.

Sprint or Marathon?

Attempting to treat autism is definitely a marathon. It kind of makes baby steps seem like leaps by comparison. When you're not living it, it's probably hard to understand. I've had people ask me if B is "getting better", "talking" or things like "is it working?". The answer is yes. So far, this therapy is doing exactly what it's supposed to do. He is learning to learn. But for someone with autism, that does not take place in the same way as it does for you and me. It has to be broken down into the tiniest minutia and then taught over and over and over and over and... 

There is no quick fix. This is going to take a long time and a ton of work and we don't know what the end result will be.  So, it's kind of hard to even give an update about B's progress. It probably sounds fairly insignificant to say that he went from sitting in a chair when someone tapped it and physically helped him to walking 4-6 feet to the chair when told to sit. In a matter of days. It's not insignificant. He is kind of blowing my mind, actually. He had an unbelievably awesome day. On a Monday, no less. His team was done with everything on their plan and had extra time left in both sessions. Most importantly, he was smiling and laughing at least 95% of the time. 

If this is a marathon though, it sure feels like a sprint so far. There is literally no.down.time. around here. I am glad that the time I put in this weekend seemed to have made a difference. I just don't know that I can do that every weekend. We didn't really have any time as a family. I feel like hubby and I just passed each other in the hall once in a while. And here it is only monday and we're totally pooped.  I guess we'll figure it out. B certainly seems to be. 

The pressure is ON

All in all, it was a good week. Monday was an anomaly. B didn't get held up by crying/tantruming the rest of the week. We know this because we are tediously tracking every event. He did great - cruising through his objectives and having a good time doing it. He kicked out some words: Buzz (as in Lightyear), Out (as in take me outside in this beautiful weather), More, boat, row (actually sort of singing along to row, row, row your boat). I think there may have been more. AND, he started walking down the stairs facing forward. He was always a back down-er before. This wasn't something he was taught - he just tried it out and never went back (no pun intended). Pretty cool.

Also, his big brother is paying attention to him in a whole new way. I think the increased focus on B so far has actually been a good thing. On the way to school one day, "Mommy, is B getting teached so he can come to school with me some time?" And on the way home another day, "I want to go home and see my friend, B". It melts my heart.

I had another intense week but it was oh-so-much better with hubby in town. I did several sessions of parent training and taught my own session for a couple of hours yesterday. That brings me to the pressure part: I am supposed to do a couple of sessions with B this weekend to see if it makes an impact on the Monday effect. No pressure there, right? I was told to think of it as an experiment but it feels like "let's see if Mom can be a good enough therapist that he won't feel like he's had 2 days off". Hubby will take the big boy out so we have sufficient 1-1 time as there is NO way for me to effectively do it with only half my attention. Wish me luck. I think I'm going to need it.

The Monday effect

Ah Mondays. Why do they have to be so awful? When I became a stay-at-home mom, that was one of the best benefits. I still prefer the weekends (daddy's home!), but I don't have that same dread that most of us feel when we go back to work after a 2-day hiatus.

Apparently, Brady is experiencing the same phenomenon. Yesterday was R-O-U-G-H. I'm not exaggerating when I say that he cried (bawled, sobbed, wailed) for pretty much all of his 2 therapy sessions yesterday. I listened from afar as I am not supposed to give him attention for it and I would undoubtedly disrupt what his team is trying to do. But the house is not that big and oh how I could hear him. Even his big bro. commented on it "maybe this xyz will calm him down". I tried to remind myself that this is a good sign and that we really do want him to fight back. Still, I couldn't help but second guess if we were doing the right thing. I know I don't have the heart for it if that is how it's going to be.

We talked about it in our parent meeting this morning and there is indeed a common Monday effect with this therapy. That's one of the reasons they typically recommend a 6-day schedule. We will have 1 weekend day eventually and I now can see the benefit even though I'm not crazy about the idea of giving up our precious weekend family time.

Today was 300% better. Okay, I made up the 300% number but I'm telling you - he was a different kid. There was almost no crying today and he was a rockstar on pretty much everything that was asked of him. Seriously...ROCK STAR. It was awesome. I hope he hits his stride and we see more of today's B and less of yesterday's. He even seems to be getting excited by his accomplishments. We've never seen that before. To see him light up when everyone is cheering him on makes it all worthwhile. Go, B-man, go!!

Overwhelmed

What I neglected to mention here is that my dear hubby was out of town for the last 10 days... and for a less-than-fun 3 day work weekend before that with just 1.5 days between trips. (It didn't seem like the brightest idea to broadcast over the internet.) Between that, our expanded therapy schedule and an inadvertent excess of parent therapy hours, I've been alternating between barely afloat and totally drowning.

This is not a good thing. And it leads to some really dumb mistakes. For instance, I royally screwed up our funding. No, make that ROYALLY. The amount we have to pay is significantly higher and not sustainable. I think/hope we have another option or two but here we go again down that waiting road. And now it's even more critical. Add a few hours a week to my schedule to try to get that figured out. And add in a few extra doses of stress all around.

And I planned to take my big boy to the circus tomorrow. Actually a friend planned it and we were all going together. It has been on my calendar for a long time. I even checked with a sitter in case my man was still traveling. I made a hair appointment for today (not an indulgence, mind you - it's been over 3 months). I sent an email to my friend saying I'd see her tomorrow. We were all set. Until my friend called TODAY and asked where we were. Yep, the circus was today - not tomorrow. I spent a total of 3 hours or so on the phone begging to exchange our tickets for tomorrow's (still not nearly sold out) show. No-go. Flush some more money down the drain. Luckily, I don't think my boy knows enough of what he's missing so we can just do something else "fun" tomorrow instead. But I know. And I'm mad at myself for being so absent minded.

I'm stressed. I'm overwhelmed. And this too is not sustainable. My parents are visiting soon. That will help give me a break. Also, we qualified for 4 hours per day of PCA (personal care assistant) services for B. That too will help. But again, it's not going to happen overnight. There's a lot of paperwork, recruiting, interviewing etc. to be done first. And then there's the issue of funding which may be changing. I should've gotten this set up first but I don't know that it was even an option. There is nothing close to a manual out there to figure this all out.

So, I had a long afternoon hair appointment where I dwelled and pouted about my circus snafu and came home to a clean house, a full refrigerator and meals planned for the next few days. My hubby's job was to watch the boys - I asked nothing more. Instead, he took both of them to costco and the grocery store (no easy task, mind you), planned my favorite dinners (which he cooks) and stocked us up for a couple of days. On the heels of a very exhausting work trip. I think you can all agree that I have a good, good man.

I'm going to try to be less overwhelmed now. My partner in crime is back and life is good. It's not easy, it's not fair, but it's good. And this too shall pass.