Reading?

That B. is a mysterious little dude. It is beyond obvious that he knows so much more than he demonstrates. It's all on his terms. If he doesn't want to do something, well then he just doesn't do it. We see glimpses of this all the time but there are two big areas lately. One is letter recognition. We are teaching him his letters in the same way we teach everything. Practice. Practice. Practice. And then practice some more. He's doing pretty well but he stumbles and it requires a lot of teaching. But then he'll sit down with another activity where he is just copying a word in plastic letters. And he will say each and every letter as he goes. "Girl. G-I-R-L." Yet, he doesn't "know" all these letters.

The other area is reading. I think it was over a year ago that he first "read" a Thomas book. Word for word. Out of the blue. I even caught it on video. It was amazing and fascinating but he has never done it again with any other book. He is showing a lot of interest in books lately. A LOT of interest. He sits and flips through them. And he has listened to books on cd and somewhat followed along. And the most random of all - I held up a book for him and he said "Nick" which was the author's name and printed on the front. And today, he looked over at a DVD that had a sticky note with his dad's name on it and said (read?) "Doug".

So who knows? Maybe he is reading and just doesn't feel the need to let us in on this huge little secret. Maybe it's coincidence. Neither scenario would really shock me. I guess we'll do what we do with everything else. Wait as patiently as we can and appreciate the slow and steady progress as it comes.

We just invested in an app for our Ipad that will serve as an augmentative communication device for B. We're hoping it unlocks his language and helps him to communicate better. Time will tell.

One thing is clear. We haven't scratched the surface of this boy's capabilities. And someday, on B's terms, when he's ready, he'll let us in on some of his secrets.

Something's clicking

Last week, we had a heart-to-heart with the 2 senior members of our team about B's lack of progress and our worries and fears. We're halfway through an incredibly critical 6-month interval following our last difficult review. This is our time to turn things around and get back on track so to speak. And well, it hasn't been happening. It feels like we have done nothing but experiment and fail. Together we agreed that we might need to re-think our overarching goal. The plan for this 6 months was to get a handle on B's self stimulatory behaviors that interfere with his learning. It was a great plan. If we could make those go away, his learning and progress would likely explode. The problem is that we're not confident that he knows that he's doing it or that he understands that it isn't an acceptable thing to do. And he doesn't have the skills to replace them. To him, this is what playing looks like - he can't separate his stims from the activity. So all of our attempts have primarily frustrated him and set us back. Without going into too much detail (as I've said before, it's all really complicated), we agreed to pull back from the strict requirements around his stims and go from there.

And something clicked. There's no way to know whether it has anything to do with what we are changing (and honestly I don't even care) but his requests have exploded! He seems to have figured out that he can just ask for things and get them. This may sound simple but for B, it's anything but. He is so used to being told what to do and so challenged to communicate his needs. He usually will do just about anything BUT talk as a form of communication. Until now. We are hearing things like "watch Thomas", "go downstairs", "want cheese", "go walk" and very specific requests for what he wants to watch or eat. Literally, he had over 25 requests in 3 hours. My favorite was this morning when he was slyly pulling trains out from the closet downstairs (which he is not supposed to do). Our PCA came down to greet him and he pushed her hand and said "go upstairs" as in "YOU go upstairs."  At OT yesterday, he told the therapist "want swing". These are 2-word requests, specific, spontaneous and very clear. And it's happening all day every day. He is also rocking it in therapy again. We've kind of come full circle to the way things used to be and it just seems like he gets it. He knows the drill and he is working like a champ. We're hesitant to get our hopes up, but something is most definitely clicking. And after the last several months we've had, it is HUGE cause for celebration.

Back at it

I've been back home now for about 2 weeks. It has taken me almost this long to feel caught up and back in the swing of things. This household is a well-oiled machine and if any small part of the routine gets off, it's not easy to get back on track.

I'm happy to be back. It was hard leaving my little man. When I was saying goodbye to him, he sat on my lap and (as he often does), grabbed my arms and wrapped them tight around him. It didn't exactly make it easy to walk away.

I missed him terribly and it killed me knowing that he most likely had no understanding of where I'd gone, why, and when (or if) I'd ever come back. He was very well taken care of and life pretty much continued along without us. Still, in his own little way, B missed me too. One of his programs was working on teaching him the names of familiar people via pictures. I'm told he would flip through the stack, find my picture and hold on to it. Our PCA played old videos for him and he would smile when he heard my voice. Yet I couldn't talk to him on the phone or computer the way you typically would when away from your child. To him, this would likely just be confusing. It felt like we were apart for a very long time.

Reuniting with B is far from typical. Sometimes it feels like he barely notices we're there or have been gone. He doesn't come running up with hugs and kisses the way my older son does. He might come close and then just jump up and down and make a bunch of noise. It's tough to know if this is because he is excited or just something he is doing for his own benefit. This time, he did repeatedly come and sit on my lap and then spout off long gibberish dialect that truly felt like he was trying to recap what I had missed.

Then gradually over the course of the next couple of days, he definitely proved that he was very happy to have me back. He followed me around a lot, watched my every move and has been ultra affectionate. My role in his life is definitely very significant. He may not be able to express it, but he needs me even more than your average 4 year old.

And as hard as it was, being away did provide a bit of a break for me. I can't even quantify what a difference it is to be responsible for only my firstborn. It's kind of a taste of what "normal" family life would be. I didn't have to stop and think about everything I said and did, didn't have to record any data, didn't have someone (or multiple people) observing me and didn't have to obsess about every single thing my kid was or wasn't doing. Oh and I didn't have 6 people in and out of my house all day. It was just me and my little boy on vacation. Except that for us it was terribly incomplete. I hate being a family of 2 or 3. In order to give our older son as close to a typical upbringing as we can, we spend a lot of time as a partial family. It's healthy and definitely necessary but it always bothers me and feels like something is missing. It's not how it's supposed to be. But then none of this really is.

Still, as hard as the day-to-day may be, I'm glad to be back with my guys. And no matter how exhausting and stressful life with B can be, my heart is happier when he is near.

Cuddle bug

On Friday, after a very minor preventative procedure for me, B spent at least 30 minutes laying next to me on the couch. Kind of on top of me actually. We have had some good snuggles lately - in the rocking chair, on the couch, in our big chair. He is not your average 4 year old when it comes to snuggles. I love it.

Tomorrow I leave for a week away - just me and big brother. My heart hurts to leave little B yet I know he'll be well taken care of and that I could use a little respite. I look forward to the snuggles when I return.

He makes me laugh

B is potty trained. The only issue we've had is that he will occasionally wait to be told to go. We've had days where he has gone 6-8 hours. He seems to think that he has to be told since let's face it, he is told just about everything else he has to do. Anyway, we used to have a system where we would periodically reinforce him for going on his own to increase the likelihood of independence. We really haven't had to do it in quite some time and it has fallen by the wayside a bit. So today, he went on his own and I decided to just randomly give him an oreo for it. Not two minutes later, he was back on the pot. He hopped off and ran to the cabinet. And I kid you not, he was laughing at me. I DID give him another cookie but it just totally cracked me up. If he had simply come up to me and asked for a cookie, I would've given it to him but somehow in his mind, this made more sense.  Gotta love him.

7-27

Today's moments were mostly about my almost-6 year old as we celebrated his bday with a Pump It Up party and a dozen of his friends. This was his first real bday party and he had a blast. Pretty awesome.

As for B, it was awesome to see him jumping right in and playing alongside everyone else. He too had a blast and was so much less work than he has been at bday parties in the past. He still needed extra attention (thank you to the world's greatest PCA), but he did amazing overall.

It was a good day.

Moments

Wow - It has been entirely too long since I've posted anything. I have sat down at least a half a dozen times but I think I was waiting for something "big" to post. For that "a-ha" moment where everything clicks and we have figured out the secret to getting B. back on track. And well, we're just not there yet. And that's not to say we haven't been trying. We have been experimenting like crazy and making lots of changes including adding twice weekly OT to the mix, lots of new staff and dramatically different approaches to his therapy.

We've learned some things along the way. 1) B is NOT anti-people (yay!). He is anti-working for people. This is easier to handle. He truly wants to be engaged with us - he just doesn't want us to continuously place demands. Understandable? I think so. 2) B does not like to fail. The sweet spot for success with programs is typically somewhere around 80%. That keeps the kids challenged but motivated. For B, it has to be somewhere closer to 90-95% or he gives up all together.

We're working on it. We are much better off than where we were before. He is no longer apathetic. He definitely cares and is motivated a lot of the time. The self stimulatory behaviors do continue to interfere though so we're dealing with that.

It's a challenging time. But when I stop trying so hard to focus on the big picture, I am reminded of these little moments of glory that happen almost every single day. Yesterday, B hurt himself and he sought me out, said "owie" over and over, and clung to me like a monkey for over 20 minutes. Whenever I'd remove even part of my embrace, he'd replace it. He needs me. He loves me. We don't even need language to know it. How lucky am I to be his mom?

So for now, I think I need to focus on these little moments. That's my goal. I'm going to attempt to log them at least every couple of days. I'm going to *try* not to stress so much about the long-term and soak up and savor all of the beautiful moments that are happening right now. And maybe (hopefully) the long-term picture will begin to fall into place.

Here is one of today's moments. Little B singing "Go away Big Green Monster". His self-stim behaviors are very present but I love it just the same.
http://youtu.be/X8kkQ8Dz8Eg

We will not go down without a fight

I wish it was yesterday. I wish we could just sort of erase that today ever happened. It wouldn't be any different but at least we could still keep plugging along believing that we were still tracking toward the best possible outcome for our little man. Now we have new information and everything feels different. Almost like it did when we officially found out that B had Autism. He was the same kid yet everything was different. Today was our 6-month review of Brady's progress in therapy and let's just say it wasn't what we hoped for. I feel a bit sucker-punched and deflated.

B has had a tough couple of weeks - maybe even a couple of months. I blogged about it recently. We've been struggling with motivation which is the whole key to this kind of therapy. If we can't motivate him, he can't learn. Additionally, his Autism seems to be taking over in a big way. His stereotyped behaviors are more prevalent than ever and there seem to be new ones every day. The vast majority of his time is spent "stimming" and it's clearly what he would prefer to do. There are times when I just can not get through to him at all. He seems to be slipping farther and farther away from us.

Just this week, we started a somewhat radical change in his therapy schedule. It feels like he is bored and kind of over the whole thing. And when we step back, we can't really blame him. In August, it will be 2 years of this. Two years of 40+ hours per week spent in therapy, almost exclusively in our home. Sometimes a week (sometimes more) will go by and he has never even left the house. He knows the drill, he knows the people, he knows what they can and can't do for him and he seems sick of it. Truly, who wouldn't be? So we knew we had to do something to shake things up. We've tried a couple of tactics unsuccessfully and now we're decreasing the hours of intensive, academic type learning and trying to build in more "natural" teaching time and outings. Easier said than done but here we go.

The review is complicated and we're still digesting but after such a positive report 6 months ago, this is disheartening to say the least. B is still making progress but it's slow. He isn't accelerating at the rate he was before. Initially, this doesn't feel like the hugest deal in the world because hey, at least he isn't losing any skills. It does, however, change everything. They are no longer predicting best outcomes. In fact, the discussion was about whether it will make sense to continue this therapy if he continues at this pace. This is the most expensive, most intensive, most disruptive, stressful therapy we could possibly do. So the payoff has to be huge. It appears that he isn't "learning how to learn" as we'd hope. He can be taught but he isn't learning incidentally - every little minute thing is having to be broken down for him and taught. He is still at about a 2-year old developmental level and he will be 5 in November. So obviously, he would never overcome his disabilities if he continues along this path. In 6 months time, we have gone from planning a "normal" life and starting kindergarten in another couple of years to adjusting to the idea of a child who will be dependent on us for the rest of his life.

I also was given a bonus 2 hours of therapy time to reward me for all of my efforts. I currently do 5 hours in addition to 2.5 hours of meetings every week. When we first started, they asked 10 and it was unmanageable. Seven will be a struggle too. I was just getting to a place where I felt like I had a bit more balance in my life. I would do absolutely anything for B but it is not easy to find the motivation without the reward.

I'm still digesting the data. This is all so complex. And we still haven't gotten our report back from the external review 2 months ago that seemed so positive at the time. Maybe it isn't as bleak as it seemed. I knew he had a rough couple of weeks but I expected the 6 month interval as a whole to still be positive.

In 6 months time, everything changed. So it can change again. It has to. But still, I wish it was yesterday.

Rough patch

B is challenging us lately. On many levels. He has been nearly impossible to motivate and his self stimulatory behaviors have been even harder to control. There have been numerous therapy sessions where we've had to stop running programs all together and just try to engage him. He has either given up or is just completely checked out. Hubby thinks he's bored. Our team thinks he has just caught on to this whole gig and figured out how to get out of it. It's probably a combination of the two. But to say that it's disconcerting would be an understatement. It's distressing, disturbing and scary. We all have a LOT invested here. I keep hearing that it's good for kids to push back. Those with the best outcomes typically do fight back from time to time. It's far, far better than apathy. At least that's what I keep telling myself.

Our team is on it. We have some elaborate plans to try to reign him in. In the meantime, the best way for me to describe it is draining. I'm more than tired. I am completely drained of energy. Parenting a child with autism is no picnic. There is nothing intuitive about it - most of the time, we are instructed to do the exact opposite of what we want to. Every single thing we do with or for B requires an elaborate thought process. And it's every waking minute of every day. Most people would say that parenting in general is a hard job. I don't mean any disrespect to fellow parents but truly, you have no idea.  Here's hoping he turns it around soon.

On a bright note, we have made some gains in the food department. Our picky, restricted eater has tried quite a few new things lately. We tried to do a structured approach in therapy but it backfired. With a more relaxed approach, he has sampled all of the following lately:

a turkey/swiss grilled sandwich
jelly beans
chocolate covered raisins
cinnamon coated almonds
2 new yogurt brands
a couple of new cereals
gorgonzola crackers
gatorade
gummy vitamins that he shunned for the last year
pizza from a new place

There may be a couple I'm forgetting. Yes, I know that most of these are not high on the nutritional charts but we are talking about a kid who literally only eats about a dozen foods. Progress is progress.

Mac N Cheese with a fork!

It has been far too long since I've posted and it's not due to a lack of developments... just lack of time and/or motivation, I suppose. So I have lots to catch up on but for now I'm excited about one very small, very hard-earned step. B used a fork to eat Mac N Cheese! I looked back at the blog and it has been close to FOUR months since we decided he needed to use utensils for his mac n cheese. Mind you, I haven't been presenting it on a daily basis but there have been lots of opportunities and he waited it out for FOUR months!!  I got him to take 1 bite last week and today, he ate half with his fork and half with his preferred hands. That's one small bite for B... one giant LEAP for mom! I have high hopes for expanding his diet going forward.

Proof that ABA works

A little over a week ago, we had B evaluated by another autism therapy provider. We are required to do an external evaluation annually to show our funding company the results (from someone other than the team we are paying). It takes a few weeks to get the report but I can say that the results were very positive. B has made some very big gains particularly in language. His receptive language went from that of a 3 month old to THIRTY months in one year! And his expressive language went from the equivalent of a 10-month old to 27 months. This stuff really works.

And, as further proof, here is a video taken yesterday of B singing the ABCs and one taken just over a year ago. He is so much clearer now. We're hoping to add speech therapy into the mix here soon and see if we can keep bumping him up.

http://www.youtube.com/watch?v=Q1OZbOQ5a9U

http://www.youtube.com/watch?v=oKbI5FkglVc

Mom, go away

It's funny how excited we get when B talks. He is repeating everything these days. Literally, he will repeat sentence after sentence. Unfortunately, the meaning behind language still isn't there. A typical exchange goes something like this:
Me: What do you want, B?
B: What do you want, B?

Me: Can you tell me?
B: Can you tell me?

Me: Do you want yogurt or applesauce?
B: Yogurt or applesauce

And so on. It's exciting that he has the ability to say the words and it's a long way from where we started. A long, long way. I shouldn't downplay its significance. It's a source of hope and I believe that one day he'll get there and actually be able to have a conversation.

Every once in a while, he surprises us by showing that he does understand some language. Like yesterday when he was watching one of his favorite movies in therapy. I went up to him to say goodbye before leaving to get his big brother from school. He tried to look around me at the movie and then quietly said "mom, go away". Most moms wouldn't be that excited by those words but you better believe I was. I think he could tell me to go jump off a cliff and I'd still throw a party.

B "reading"

So, I've been trying to capture this on video because it is so freaky weird. Several months ago, B picked up this book and "read" it word for word. As far as I know, it's not a book that had ever been read to him. Or if it had, it couldn't have been many times since no one remembered it. So imagine my shock that day. I'm still not sure what to make of it. It is only with this book so maybe he just has this one memorized somehow? Regardless, it is fascinating. This video isn't his clearest enunciation and he skips some of it. I have seen him literally say every word on every page but I can never seem to capture the best examples on video (of either of my kids). Still, if you try to follow along, you should be able to see that he is saying each word.  I have no explanation.

On a lighter note

No one loves a cookie quite like B...

Mr. Senator, Meet B.

I am not a political person. In fact, I pretty much despise politics. But being a parent often means doing something on behalf of your child that you might not do otherwise. Along these lines, today we visited the capitol: me, hubby, B and one of our therapists (along with at least 100 more concerned parents, therapy providers and kids). This is the 3rd time I've been there since we became part of this Autism club. This isn't a club we ever wanted to join. In it, we are tasked as parents to "advocate" for our children, their services and the already limited funding that is available. I am a parent of 2 and I can not deny that parenting any child is hard. But parenting a child with autism is in a whole other league. Our worries are substantial as it is and our time and resources are limited. We shouldn't have to worry about how to pay for the treatment that has been prescribed, tested and proven to work for so many children. Yet, this is what we face.

Despite the fact that we pay beaucoup premiums for insurance, NONE of B's therapy is covered. We are "fortunate" that the state of Minnesota does currently provide coverage for his ABA therapy but it comes at a cost. We pay a steep monthly parental fee... roughly the equivalent of private school tuition. In addition, together with our provider, we submit laborious paperwork every 6 months so that it can be reviewed and determined whether or not we still are worthy of these services. There is never a guarantee. Right now, we are covered through the end of June but there is strong cause for concern. Blue Cross Blue Shield used to be the one insurance company that covered this therapy but they have pulled out. It begs the question of how much longer the state will continue to provide funding when private insurers don't have to. The costs of this therapy are astronomical. If we were to pay out of pocket, it'd be roughly $12K per MONTH and B is targeted to spend 4-5 years in this therapy. I don't know many people who have an extra $700,000 lying around, do you?

To me it seems like a no brainer. Yes, this treatment is expensive. However, it is evidence-based, medically necessary treatment. And we can't deny that there is a huge population of kiddos who need it. One in 70 boys are being diagnosed - nearly 1% of the population and more than AIDS, diabetes and cancer combined. And kids are recovering. With early intervention behavioral therapy, nearly 50% of kids are gaining typical function... as in losing their autism diagnosis all together. And the vast majority of other kids are making substantial gains and significantly improving their quality of life and ability to contribute to society. We can already see a huge difference in B and this treatment is the only thing that gives us hope for his future. So why are all of these beautiful children being discriminated against?

B needs this therapy and our family needs this therapy. But this is a bigger issue that effects our entire society. At a minimum, we need to ensure that our state funding (MA/TEFRA) does not make cuts so that we can continue what we have today. But what we really need is for private insurance to step up and pay for treatment. There is a bill under review (THE AUTISM HEALTHCARE PROTECTION ACT: House file 1071/Senate file 1020) to require private insurance to provide coverage for care of autism. It would save the state of MN $1.6 MILLION per year. Not to mention the costs that would be saved by treating these kids for a few years vs. an entire lifetime of dependency on special services. I can't even begin to do the math on those savings. See? No brainer.

In a 5 minute meeting, we attempted to convey this to our senator. I'm so glad B was there. I think the sight of our sweet little B playing trains and singing to himself on the floor was far more compelling than anything that could have come out of our admittedly nervous mouths. I'm glad we made time for it and I'm glad we dragged our little trooper all over the capitol all morning to make it happen. Something tells me we'll be doing a lot more of this. It's not something I want to be doing and not something I enjoy. But as we try to get our arms around exactly what it means to be advocates for our child, it's something that we will not be able to do alone and I may be asking for a lot of help.

You win some, you lose some

We're coming up on a month now without a single bite of mac n cheese. He just won't do it. Food is clearly not going be easy for us.

We had a big win today though. Really the best kind too because there was barely a battle in the first place. We decided to get rid of the soft cushy potty seat we've been using since August. I'd like to be able to go places without carrying it around and I'd like him to use the toilet like everyone else. So we just put it away. He got up this morning after being dry all night... have I mentioned that he potty trained at night simultaneously? I'm still amazed by that. Anyway, he clearly had to go. He walked in the bathroom, looked around in confusion and then just walked out. When I told him to go potty, he laid down on the floor and cried. I kind of held him on there to show him what he needed to do and he cried and  tried to hold it but ultimately his body gave out and he did it. And I praised him like crazy and celebrated. Then 4 hours later when it was time to go again (he only goes every 4 hours - amazing!), he just walked in and went - no problem. He even was successful with #2. NO BIG DEAL. Color me shocked. This kid is full of surprises!! We'll keep working on that mac n cheese.

Also this week - he went along to big brother's dentist appointment for "practice". He did just fine there. I was a little worried he would remember the last traumatic experience and try to bolt. But he sat in the chair and stayed during the whole visit. Overall, he was fine but I'm not sure it will help much for his actual appointment when they are actually doing things to his mouth. Side story: in the lobby, big brother made a friend and was immediately telling her all about B. I overheard "that's my little brother. He talks kind of funny but he's learning. He does have some words too". So sweet. And later, he told me that his new friend said B just "has a different brain". So true. So smart. I hope other kids are this wise and accepting.

S-T-U-B-B-O-R-N

Today marks one week since B has eaten mac & cheese. ONE WEEK without his beloved meal that he literally had been eating close to every day. It is by far his favorite food - one that he requests by name - yep, that's a 3 word request which we don't get many of.  But here's the thing: he eats it with his hands. Disgusting would be putting it mildly. Not only does he shove it in but he likes to squeeze it between his fingers and often rubs his eyebrows, hair, chair, clothes etc. before we can get him cleaned up. And I'm done with that. He is perfectly proficient with a spoon so it's not a skill issue. And let's face it, it's not like mac & cheese has a lot of nutritional value. He just has SUCH an incredibly limited diet that it's hard to mess with it. And, like I said, he requests it by name. Still, I shudder to think of the idea of having say an 8 year old who eats with his hands.

So last Monday, we bit the bullet. The idea was just to get him to take 1 bite with the spoon and then he could have as much as he wanted the way he's used to eating it. Then gradually, we'd increase the requirement until the hands were no longer an option. He didn't take to the idea. He cried and threw himself down on the floor and did all of the things that toddlers do when they throw a fit. Every time we tried, he would cry and throw himself into my arms pitifully. We've been presenting a spoonful of mac and cheese once or twice a day now for a week and he hasn't budged. He doesn't get upset anymore - just won't go near it. I'm guessing we'll back off a bit and wait and see if he'll request it again. Or we may just be done with mac and cheese all together. Unfortunately for B, I can be stubborn too.

Okay so this picture is from almost 2 years ago and it's not quite this bad now - it's no longer bib-worthy. But you can see he has a long history with the stuff and you can see how it might not be all that fun to clean up. And you can see how stinkin adorable he was!

Just like everyone else

This weekend, I took B grocery shopping. A mundane task that most everyone dreads doing with their kids. And something that most 4-year olds do with their parents on a regular basis. I can't remember the last time (if ever) that I took B to the store though. There have been a few times recently with big brother but not just the 2 of us. I wasn't sure how he would do now that he's too big to be contained in the front of the cart. When I shop with big brother, I either have him walk and help or he rides in the main part and I pile the groceries around him. Having B walk wasn't really an option (he would likely bolt) but I also thought he would get into anything that I put in the cart. He did really great though. He did babble quietly to himself most of the time but nothing that would draw any attention. He waited a loooong time at the pharmacy and in line too. He left the groceries alone until they were bagged and then helped himself to some goldfish. Honestly, I saw at least 2 or 3 other kids behaving worse than he ever has in public. It was a good trip. I was glad we were able to be just like every other 4 year old for a change. Even for something as mundane as grocery shopping.

That was last weekend. Flash forward to today when we tried again to do something like other regular families. Big brother's preschool had a pizza party and since Daddy had to work, our PCA and I took both boys. So I guess you could argue that we already were NOT like other regular families. Still, I was excited for B to get out and to have some fun.  Unfortunately, it was pretty much a disaster. It started out well and B was excited and running around. But then it got crowded and there was a very LOUD performer and lots of kids running and jumping and being crazy. At first B tried to leave and then he just decided to cling to me and insist on being held. I had to hold him standing up because if I tried to sit, he would push on me until he could get me up. He refused to eat a bite even though it was pizza, goldfish and cookies which are usually huge hits. If there is a silver lining, it's that he didn't melt down and we didn't have to leave. But I don't know how much longer I'll be able to hold my very tall, very heavy boy this way. I'm sure I looked ridiculous and I'm sure people were wondering if I was crazy. Big brother didn't even really have much fun. For some reason, he decided to be shy and just sat with our sitter the whole time. And then he too asked for a piggy back ride when leaving. I didn't feel right saying he was too big after I'd spent the whole time holding his equally big brother. I guess I got my weight lifting in for the day. I got some nice words of encouragement from our preschool teacher though. As I walked by with B on my back, I muttered "I don't know why I try". And her response was "I love that you try."

When our sitter was leaving to go home, she literally had her hand on the door and B took it and led her away. She went with him because she (like I) was wondering what on earth he wanted. He led her all the way to the basement and asked her to "bounce me" on the big red ball like he had requested several times earlier today. So we ended on a high note. How awesome for him to be that motivated for a social activity. It's better than awesome actually. And on the heels of a very difficult evening, it was just what I needed to keep on trying.

Holidays, vacation and a New Year. I'm tired already.

We returned this week from an almost 2 week "vacation" to visit our families in Texas. It had been an entire year since we got to do this. B's vacation time is very limited due to his therapy and therefore so is ours. 

I had some apprehension about the trip. A year is a very long time (particularly in the life of a 4 year old) and I wasn't sure how well B would handle all of the new environments, transitions etc. I am very happy to report that he did great! He flew like a champ. Yes, he was loud at times but I don't think it was disruptive and he never cried or tried to get up from his seat. We even got frisked at Security and he handled that okay too. He did really well sleeping in 2 new places (he was in a crib last year) and even shared a room with his big brother for part of the time. He stayed on track with potty training (whew), kept up with vocal imitations pretty well and was engaged and participatory for the vast majority of the time. He was sick for a couple of days but it was mild in the scheme of illnesses we usually seem to get over the holidays. Just a couple of days of being lethargic and not eating.

For us, it was far more relaxing than last year as well. Therapy was too new for us then and we were paranoid and nervous about messing everything up and losing the skills he had started to acquire. It was good to be with family and both Christmas and New Year's were wonderful. We are blessed in so many ways. There were lots of fun times on this trip too. Big brother held his first sparkler. Both of them went to Pump It Up and completely shocked me with their bravery. B discovered a love of mexican tortilla chips. The boys got to play with their cousins, aunts, uncle and grandparents. Not to mention the fact that it was about 70 degrees and we got to be outside without coats, hats and mittens for a change. Good stuff.

But here's the thing about being a parent of a child with autism... there never is truly  vacation. Both hubby and I worked with B while there to try to keep his stims down and to practice enough therapy that he wouldn't totally revolt when we came home. B can't really have down time so neither can we. And if we do, it's accompanied by a fair amount of guilt and worry. Case in point: by the last couple of days of the trip, it was clear that B was slipping into bad habits and becoming harder and harder to engage (or flat out refusing to).

And then there's the issue of coming back to work. This is hard for all of us and B is no exception. We had half a day at home to somewhat re-group and then the next day was full-on BUSY with a full staff in and out of the house. B cried for the first 10/15 minutes straight and then mostly got a handle on it. It has been a tough week trying to get him back in the swing of things. I tried to do my session with him this afternoon and had to totally abandon the scheduled programs and just focus on getting him to behave appropriately. He's so smart, so full of potential and sometimes I just want to shake him and tell him to snap out of it. We'll get there. He just isn't going to let us take the easy route. Here's to 2012!

Here are some pics. I took waaaay too many!