More of the good stuff

It has been quite a week around here. We had a ginormous snow storm - something like the 5th largest...I could be totally making that up but suffice it to say, it was a LOT of snow. We were basically snowed in for 3 days. Hubby had to make it out of town through a series of very annoying and difficult hurdles so the boys and I were on our own for a few days. Then my big guy got a stomach bug followed by a doozy cold. Bring on the Christmas vacation!

Things are happening so fast and furious around here that it's hard to keep up. The singing is still totally taking off. He probably has over 10 songs that he sings now. Yesterday, he was even hearing songs for the first time and trying to sing them. This is a huge step. Kids learn by imitation. B is missing that ability. If he can learn to imitate, he can be taught so many things including language/communication. I have yet to get any of it on video (why do they always turn off as soon as a camera comes out?) but it is so fun and so amazing. He sings the complete ABCS including the "now I know my abc" part, twinkle twinkle little star, Elmo's song, a couple of muppets songs, some of the toy story theme song, a couple of songs from a group called super simple songs on Youtube and still more.

Since he seems to be responding so well to videos, our team tested out something new today. They videotaped themselves doing simple things (SUPER simple like putting arms out or spinning or tapping on a table). B then watched the DVD and imitated what they were doing. He seemed to totally get it. It was amazing to watch. I can't even put it into words because it sounds SO simple but he has never copied anything we've tried to teach him. He just didn't seem to comprehend the concept. To see him figure this out with barely a prompt was fascinating. I am in awe of our team. Obviously, it's a whole lot more work to film these things, put them on a dvd and THEN teach to B. vs. teaching 1-1   in person.  My confidence in them grows by the day.

Tonight, when hubby put B to bed, he labeled at least 5 or 6 things when Daddy pointed to them (frog, dog, ball, duck, car, boat, cat) and then POINTED himself to the buttons in his Thomas book and named them (Thomas, Percy, Bus, Helicopter). Someone pinch me.

On the flip side, he has been on a bit of a food strike and waking up in the night pretty consistently again. It's certainly a roller coaster and a marathon. But as long as he keeps giving us these awesome bits of glory, we're not about to jump off the ride.

Hope

Yesterday was our first 6 month review of B's progress. Of course, he has only been in the program since September so it was really more of a 3 month review. It's premature at this point and there are absolutely no guarantees but it was a really, really good review. The data confirmed how we've been feeling all along... B is getting it and he is learning and progressing!! He has made some huge strides in a very short period of time. We were told that everything pretty much looks as good as it possibly could at this point. Plus, the staff was so full of praise for hubby and I that we felt like rockstars ourselves. It's good to know that the hard work is paying off. I'm proud of our family and full of hope for our future. Hope is a beautiful thing.

B was in rare form during the meeting too. He was in a therapy session downstairs. We heard laughter and all sorts of good noises (no crying) while we had our meeting. He came up to me at one point during the meeting and jabbered to the whole group, then sat on my lap and picked up my pen and scribbled on my paper. He seemed to be hamming it up. What a change from the kid they would've seen a few months ago. Later,  we heard him belt out "That's Elmo's song" with some major gusto. The singing has totally taken off. We have a new program where he is to be given whatever he "requests" verbally no matter what so that he gets what a great thing language is. I don't know if he's on to us or if it's just a coincidence but the first session where that was implemented tallied THIRTY of these vocalizations. And he is just singing ALL THE TIME. Very cool.

Yesterday, we also said goodbye to our senior therapist who has become a dear friend and part of our family. I literally choked back tears every time I looked at her in the meeting and the waterworks were full on when we finally said our goodbyes. We will always be grateful to her and will not forget her contributions. The first couple of months are key and we couldn't have had a better leader to get us up and running. Our time together ended too soon and she will be sorely missed.

Husband of the year

So, I have the greatest husband in the world. For my bday this week, he gave me the best gift: a day off. All of you moms know what a foreign concept that is. Even more so now that we have such a packed therapy schedule. I had a fully indulgent day of shopping and spa treatments. And then came home to roses and cards from my boys followed by a decadent dinner with my hubby. What more could a girl ask for? I could not love him more.

In addition, he took on the job of mr. mom for the day and got a taste of what the day-to-day is like around here. It sounds like he was a rockstar (no surprise there). I don't think he's anxious to trade roles anytime soon though...

The laugh

We had our weekly progress meeting yesterday. It had been a few weeks because of Thanksgiving and a dr. appointment for B. We went over the highlights for both of the last 2 weeks. Two weeks ago, he had his best week ever. His "acquisition rate" was close to 8 - meaning he gained 8 new skills in one week. Um, yeah - that's awesome. It went down last week but he missed 3.5 days of structured therapy due to the holiday so it's not a totally accurate representation. He appears to be thriving.

We're addressing a couple of new things that are a bit hard to hear though. First, we've started a "procedure" whenever he cries. He has to do a totally arbitrary task - putting rags in a basket, then wait 20 seconds to see if he calms down, then keep repeating it until he calms. One of the first times, this went on for about an hour but overall, it seems to be reducing the length of time he spends crying. This is one that baffles me. It seems totally counterintuitive and honestly, I just don't get it. But I trust our team and their expertise so I guess time will tell. I know I would LOVE to cut out the crying. It still kills me to listen to it.

Secondly, one I've really been dreading - his laugh. In the words of our team leader, "B is super adorable" (I tend to agree) so it's hard not to get caught up in his laugh and inadvertently reinforce a stereotyped behavior. B has a couple of different laughs and I have to admit that I adore both of them. One of them is a typical laugh where he is genuinely delighted about something. The other is what they call a "stim" meaning self-stimulatory behavior. This is the one where he is sort of out of his mind, drunken laughing at nothing in particular. This is the one he does alone in his bed for hours in the middle of the night. It too is adorable and it's no secret that I am a fan - after all, that's the name of this blog. The problem is that it prevents him from being able to focus, to learn and really to function. It's one of those things that separates him from his typically developing peers. So, I'm not surprised that the topic came up but I know I cringed when it did. Fortunately, at this point - we're not looking at stopping the behavior or having any sort of negative consequence. We were all just cautioned to avoid reinforcing it (i.e. coochy, coochy coo - B, you are SO cute and funny) and not to try to run any of his programs while he's off in his own world that way. No big deal I suppose. I just don't want to lose my happy silly guy. It still hurts my heart to acknowledge that something I have always found so endearing is part of the autism.

We've had some recent sleep disturbances again. B has been waking up in the night and not napping consistently. We had about 3 nights in a row of poor sleep. Hopefully that won't continue because I am sooo feeling it. Last night, he slept through the night but woke up early - as in 5 a.m. early. In addition to his chatter and laughing, he belted out a strong Twinkle Twinkle Little Star. Even at 5 a.m., it was music to our ears.

Dates with my "big boy"

B has become such a focus in our house since we started treatment. He has a large cheering squad who play with him and go berserk over every little thing he does and they are here 40+ hours every week. On top of that, mommy & daddy are required to spend a significant amount of 1-1 "therapy" time with B every week. All of this means that there is a lot less attention to go around.

This is such an extreme change for his big brother. I always felt guilty before because my oldest was so dominant in demanding attention and B didn't demand it so didn't get nearly as much. Since that is the nature of my big guy's personality, I haven't ever really been afraid that he would allow himself to be overshadowed by a sibling with special needs. Still, I can't claim that his life hasn't been completely changed by this new regime. There are a lot of benefits for him.... super-cool, fun therapists that play with him too and much more focused play time with me since I have to keep him from intruding on therapy and can't really multitask or make him play on his own much anymore. And he has school 4 mornings a week which gives him something of his own. Still, there is a lot of "wait just a second" or "yes, I can play with you but only for 2 minutes and then I have to get back to working with B". There are changes in us as parents too of course. We're busier, more stressed and pulled in more directions. I find my patience wearing thinner and my expectations for him growing so that he can be more independent and the "big boy". For the most part, he has really embraced it. He's proud of the things he can do on his own now that he's a big boy and he LOVES having all the "teachers" around. We do see twinges of jealousy from time to time though and disappointment when he doesn't get to play for as long as he wants to. It's heartbreaking. 

So now that we have a regular sitter, I'm trying to find ways to make sure that he knows how important and special he is. And ways for his life to be a little more "normal" like it was before. Every week, we will have either a "mommy date" or a playdate with friends... or both if he's lucky. Last week was the first mommy date. We took a half day and went to the mall of america, rode rides, had lunch and ice cream and just generally had a great time together. Today we ran some errands (including a haircut for him) and then went to a different mall and rode the train and had lunch. After lunch, he jumped down from the booth, threw his arms around me and said "I love you, mommy". This is the first time he has ever initiated those words - it has always been "I love you too". It's a feeling I won't soon forget and I can assure you that these mommy dates will continue. I have a million things I could've been doing instead but he just proved to me that this is time very well spent. 

Giving thanks

I have a LOT to be thankful for. We have everything we need in abundance - a roof over our heads, a warm place to sleep, food to eat, etc. etc. However, there are a few things I'm particularly thankful for on this day:

The gem of a husband that I have who not only cooks but cooks AMAZINGLY. I have not had to lift a finger for our delicious thanksgiving feast. An added bonus is that he actually LIKES to cook. I do not take this for granted.

Our incredibly supportive families on both sides - they are supporting us on multiple levels and I could not be more grateful

B's therapy - it is such a good feeling to know that he is getting the help he needs and I am thankful for the awesome people who work with him

The wonder and delight my big guy has for xmas and thanksgiving this year. So fun!

that I got to be in my pjs until 3:00 today and we have 2 more whole days of just our foursome

that we get to spend xmas with our loved ones

There is lots more. Lots, lots more. 2010 hasn't been an easy year for us and it's easy to lose sight of just how much we have to truly be thankful for but we are very, very blessed.  Happy Thanksgiving!

Definite progress

We did a new videotape today. It goes like this: 10 minutes of B playing on his own while I totally ignore him, 10 minutes of him directing what/how we play and then 10 minutes of parent-directed play where I have to get him to play 5 different toys with me. Two months ago, B cried/screamed/tantrumed pretty much the ENTIRE 30 minutes because he wanted to leave the basement. No fun. Today he was a different boy. I still didn't feel like it was a totally accurate assessment of his play skills but it was at least more representative. For the first 10 minutes, he just jumped around and ran and laughed and ignored all toys. He played right next to me but did not require my attention. The next 10 minutes, we played "social" games like tickling, pulling him to me etc. He never wanted to play toys but he was totally engaged. He would anticipate me pulling him back and take a couple of steps backwards while looking over his shoulder. Cool stuff. For the last 10 minutes, I was pretty astounded. He completed an entire puzzle with no trouble. He played with the toy kitchen and did try to leave it once but was easily re-engaged. We also played with duplo blocks, a little people castle and with mr. potato heads. He rocked it. Just two months later.

Shortly thereafter, my big boy threw his third doozy tantrum while therapists looked on. He was very tired, sick with a cold and very very awful. I was trying to put B down for a nap and holding myself back, which was no easy task. And then it was over basically as quickly as it began. He requested a snack and was chatting and laughing when I came out. That's something that has always cracked me up about kids. When it's done, it's just done - nothing like adults where we continue to stew and dwell.

B just sang Twinkle Twinkle Little Star - a darn good approximation. It's so interesting how these songs are taking off. Imagine a 1 year old who has said a couple of single syllable words suddenly singing a song. That's what it's like.  Fascinating and super exciting!

Snow is coming down here pretty hard. All 4 of us are in for the next 2 days - no therapists, no schedule. It feels good.

Roller coaster

Somehow more than a week has gotten away from me since I last posted. Well, not somehow. I know exactly how - there just isn't enough time in the day anymore. So I can already see why this blog was a good idea for me. I can't even remember what happened in the last week - I never would've been able to keep up with B's progress without keeping some sort of a written record.

The best synopsis of the last 7 days would be one big emotional roller coaster. Parenting is that way, isn't it? These days, there just seems to be a larger variance. My highs are really high and the lows are really low. And they happen practically on top of each other.

B has been singing the ABCs... well, doing a really good approximation of it. He has done it multiple times now after listening to it. It's adorable and really exciting. There's a high.

On Thursday, we had B's 3 year check-up at the pediatrician. That visit was a bit of a low. We're sort of in a therapy bubble right now since that is how we spend practically all his waking moments. In that context, B is a total rock star. He is doing so awesome cruising through his programs and we have a whole team cheering his accomplishments around the clock. It's tough when I take him out in the real world and see the the differences between where he is developmentally and where he should be. Going to the dr. is a particularly hard experience because it's already a traumatic place for him. He was really upset just by the weight and height check. Really upset. All in all, it was good news though - he's on track for growth despite the ultra-limited diet he puts himself on. Big relief. The really tough part came when I decided to do a blood test to check for food allergies/intolerances (more on that later) and they called for "back-up". He's not violent by any means but he also doesn't understand language the way a typical 3 year-old does so it's not clear how much he understands of what is going on. So they were taking precautions. He actually did very well. I hated holding his legs between mine and firmly planting his shoulders against the table while they drew blood. He did recover incredibly quickly. It was just a gut-wrenching, heart-breaking, draining experience.  

Another high - big brother grabbed B's hand when we picked him up at school and they walked out together for a bit.

I know there were lots more on both sides - I'm just too tired to remember it.

Tomorrow, we're videotaping the assessment that I did with B when therapy first began - the one where he cried the entire time. I really hope it's another high point. Stay tuned...

Good Monday

I was a little afraid of the post-birthday letdown today. We definitely overindulged the train fetish all afternoon yesterday. He did have a little bit of trouble related to giving up trains today (and a few BIG meltdowns) BUT.... all in all, it was a good day.  There were several huge highlights:

-He brought me downstairs this morning and put my hand on the tv and ever-so-quietly said:  "Mama, show". A 2-word sentence that included mama. Be still my heart.
-Our supervisor did a few assessments today (only 2 months after the last round). One thing she tried was having me stand a little ways behind B and just say his name and talk to him. I said things like "come see mommy." At first, it didn't seem to register (which I believe is what happened last time) but THEN he walked all the way around the coffee table with a huge grin and hugged me. Awesome. AWESOME.
- Later, watching Toy Story 3, he said  "Hi Buzz, Hi guys". I have no witness but I SWEAR he said it.  In general, he did a lot of talking today: "buzz, pizza, daddy, hi"
-one of his bday gifts was a plastic pizza set. Without any prompting, he picked up the cutter and pretended to slice the pizza. Pretend play - wow.
-Another gift arrived today and was a pair of Thomas Rain boots. His face lit up (this we expected) but then he tried to put them on. This we did not - he totally got what they were for. Again - wow.
-Bringing me downstairs and leaning under the couch in an attempt to get me to follow. Buried very far behind the couch was a Toby train. How he knew it was there - I have no idea. But he definitely knew. Needless to say, he got to play with it.

I also had a parent conference for big brother's preschool. All in all, it was very positive and she said he is a joy to have in class. Phew. And he napped today.

Yes, it was a good day.

Happy 3rd Birthday, buddy

Wow - it has been quite a year. B had his first developmental evaluation in December of 2009. This time last year, our biggest concern was that a) he had a cold on his bday and b) he was late talking. Little did we know.

It has been one heck of a roller coaster year. That said, something tells me this coming one could be even bigger for both him and us. Here are some things I will always treasure from the little guy's year as a 2-year old:

His intense love of trains
His awesome laugh
His melodic gibberish language
How cuddly and snuggly he is
His love of jumping (on the bed, on the trampoline, in his crib, on the floor - you name it)
His yummy cuteness - the cheeks, the big brown eyes, the dimples
The sweet way he takes our hand to lead us to something he wants or needs
The way his face lights up at Thomas or Toy Story
The beginnings of basic language emerging
His incredible resilience through a total overhaul of his world
A little bit of insight into how he learns and how his brain works

B - man, I could not be more proud to be your mommy. We love you, little dude!

And here are a few pics from all 4 of his birthdays.

Day #1:

First Bday:

At 2:

 Today: the big 0-3:

I'll take the tantrums

Today was super challenging. Not so much for B and not even because of B. Today was big brother's turn. He truly has done remarkably well through all of this with so many major, major changes in his world. He's growing up and overall I've been really happy with the age and phase he is in now. Today was not one of those days. In my parent meeting this morning, he just could not keep himself entertained or quiet. He sat at the table with us and just kept whining and trying to get attention. After a warning or two, I had to go put him in his room and let him cry. After school, he had some time to play with one of the therapists but he wouldn't comply with taking turns running the show (so to speak) so she  stopped playing. And he cried and followed her around and just generally behaved very badly. It was a delicate balance to avoid giving attention and also keep him from escalating the behavior.

It's very interesting to have your parenting skills evaluated on a daily basis. It's one thing with B - the therapists are the experts and they are the ones implementing his training. I am a bit at their mercy. But with big brother - it takes some getting used to. I do agree with suggestions they have made and it's kind of nice to have help doing a job that definitely doesn't come with a handbook. It's just weird to have someone here observing 90% of my interactions with my kids. There is a lot less rule bending.

On the bright side, B is still plugging along fantastically. There is a LOT less crying and it's fun to watch him rapidly making progress. I'm looking forward to our review in December to hear their analysis.

What a day

A lot happened yesterday but as I went to bed at close to midnight, blogging was one of the things that didn't make the cut.

The day started with an early blow. I learned in our parent meeting that our beloved senior therapist is moving to Australia in early December. I was a little surprised by how sad this made me as my eyes welled up immediately. In a short time, she has become an important member of our family. I have joked that she lives with us. She is here something like 30 hours a week (maybe more) and she is really shaping B's programs, supporting our family and creating a lot of FUN for both boys. She has had a huge impact on all of our lives and will be sorely missed.

Later on, I had a couple of really interesting glimpses into B's learning challenges. I was working with him on matching but the things I was using were a few steps back from what he's currently working on with the therapists. The current technique uses the items by themselves but we used to put a blank piece of paper underneath them. I did it without the paper (not realizing that he didn't learn it that way). He was a bit stumped. When we corrected it and put the paper out, he had no problem. He is completely literal - no substitutions. That's another reason that the intensity is so high. He can't naturally generalize the learning the way the rest of us can.  Another time, the senior therapist was trying out a new instruction (Stand). After focusing on sit for 2 months, he was really confused. He'd stand up out of the chair but then try to sit on the ground because he assumed she wanted him to sit. It's really fascinating. This disorder is very real and he has to work SO hard to learn. So hard already and he still isn't even 3.

But he is learning. I was sitting at the kitchen table last night and big brother was watching Caillou. B had been watching his favorite, Thomas earlier. B came over, took my hand and led me to the TV. When I didn't do anything, he handed me the remote and then said "Thomas". I quickly switched the show and thankfully big brother didn't mind.  Look out - my kids may soon be arguing over what to watch like typical siblings.

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.

Cue the tantrums

I predicted this. My easy-going, happy go-lucky boy does in fact have quite a temper. We're seeing all sorts of protests these days in varying degrees. Last night was the mother of all tantrums for him. When I turned off a video they were watching and said it was time for bed, let's just say B wasn't happy. He went on a bit of a rampage and swept toys off the table and onto the floor, knocked over a kitchen chair and threw himself down on the floor. I still wouldn't say he was in a rage - he was just sobbing and couldn't seem to get out of it. I did as I've been directed and completely ignored it, trying to read to his brother over the loud crying. Once he was finally calm, I went to him and he collapsed, exhausted, in my arms. He went right to sleep after that (kind of a nice side effect).  We were assured in our parent meeting this morning that this is a very good sign. I've read about this. These kids are having their lives turned upside down. It's good that it bothers him. It's good that he cares and it's good that he's letting us know about it. It's the kids that are totally complacent that are less likely to have a good outcome because they aren't motivated to do something about it. So, it's a good sign. Not a fun one - but a good one.

Another funny/sweet big boy story from today. We had 4 team members here this morning. Two were meeting with me and 2 were playing with B. My big guy ducked down in the basement with the therapists for a while. On the way to school, he says to me "Mommy, I had fun playing with the girls at my house. And, I've been thinking - having all these girls in my house is kind of like a family." Indeed it is, buddy. A family unlike anything I've ever experienced but I guess it is some semblance of a family. I'm pretty proud of how well he's starting to handle all of this.

Delicate balance

Today, when our therapist arrived for a second shift, B threw a toy down the stairs, said "uh oh" and turned and grinned. It was a pretty big, exciting moment. He got huge kudos for talking. A minute or two later, he tossed something in his room and again said "uh oh". Therein lies the balance. We want to reward him for talking but do not want to reinforce the behavior. It's the same issue that makes me want to give him cake or a cookie at 8:00 in the morning because he tried to say it.

Also, he just took popcorn out of big bro.'s bowl and ate a handful and then wanted more. This too is huge. B is not willing to try new foods typically. He pretty much pushes anything away that he hasn't eaten before and liked. We've tried popcorn several times before and he wanted nothing to do with it. Now, it's not like he's eating broccoli or something with some actual nutrition but I'll take it. It's the little things.

And because I do not want to neglect my big boy, I just have to log this comment because I don't ever want to forget. Twice now, when I've done something he didn't like, he put on his best authoritative tone and declared "Mommy Nicholas". It makes sense, right? When he's in trouble, he's Andrew Nicholas. Love it. Love him.

Sleeping like a baby

I did end up going in B's room last night. He quieted down for a good long while and was doing his usual jabber. However, it was 10:30 and he didn't sound close to winding down. So, I went in and picked up all of his stuff (pacifier, lovies, blankets) and put them back in bed with him. He went right to sleep. I'm not sure if it was the right thing but I felt like I wasn't reinforcing the crying. And I didn't pick him up or talk to him. I just didn't want him awake all night.

That said, he went down without a single cry tonight and was asleep within 45 minutes which is fast for him especially considering he took a nap today. Today was a day free of therapy - I hope that's just a coincidence and not a correlation. We'll find out tomorrow.

B has been rocking the eye contact and his "sit" goal (learning to sit in a chair when asked) and he has had a lot of vocal approximations this weekend. He's a superstar - I just know it.

STILL crying

What is going on with this bedtime crying? He hasn't done this in so, so, so long. It was MUCH easier to let them cry it out when they were babies though I didn't think so at the time. It has been almost an hour since I said goodnight. He has alternated between whining and sobbing for at least the last 45. I thought we were in good shape since he didn't start it right away but I was wrong. I'm trying to keep myself as busy as possible to avoid going in there. But I'd be lying if I didn't say I'm hating this. I could use my team of cheerleaders right about now.

The good, the bad and the ugly

Today was our official review of all of the assessments and B's plan for treatment. At this point, it's really too soon to tell much about his prognosis or response to therapy. Still, they collected and presented the data.

First: the ugly: According to their "tests", he is only about 5 months old developmentally. They recommended a four year intensive plan to try to catch him up. Four years... ready for kindergarten around age 7. Gulp.

The bad: He needs the maximum amount of therapy they offer - 40 hours per week, 6 days a week.

The good: He does have some encouraging skills. He responds extremely well to social reinforcement and they are "excited" and "optimistic" about his potential. And, they think we as parents have "what it takes" to make this work. In fact, they are so confident in my abilities that I am being rewarded with double the amount of time typically required for parent-delivered therapy and almost double the number of goals. Also, his external assessments by a psychologist and the school district both gave him a much higher developmental score (the same score in fact) so it could be very likely that their testing is skewed much too low. I personally am quite sure that he functions at a much, much higher level than 5 months.

It was a bit of a sucker punch in the gut but I still feel encouraged. We'll have a much better sense of his potential outcome in our next meeting (end of December). In the meantime, I plan to work my butt off so we can blow them away with his progress.

And here we are with another night of crying when I put him to bed. Tonight, he took it to a new level and threw all of his blankets, lovies and pacifier out of the crib. I went in once but after he did it again, I decided it was a negative behavior that shouldn't be reinforced by my attention (I'm getting the hang of this). He's now whining off and on and staring down at the stuff he threw (thank you video monitor). He has been in bed for an hour and 20 minutes but who's counting?

No more tears

B's in his bed crying. This is extremely unusual bedtime behavior. He usually takes a long time to go to sleep but he never cries. I have already gone in once to check on him. He was peering over the side of the bed and sure enough, had dropped his bear behind it. Now I think he is just really tired. It was a no-nap day. But I can't wait for him to fall asleep.

There is entirely too much crying around here right now. We're working on this. Our team wants him to be in a place where he is challenged but successful and motivated. We don't want him frustrated and we certainly don't want him to give up. As best we can tell, he isn't crying because of the new demands being placed on him (they're not much and mostly fun play at this point) but just that he isn't able to do what he wants to do instead. It's a control thing. Really, who can blame him? I would be pretty upset if someone started invading my personal space and re-arranging all of my free time.

And we're working on our responses to his crying... as in, I can not give him physical attention while he's crying but have to wait until he stops. It makes sense - we don't want him to use crying as a way to get attention. But it's not easy.

Five more minutes and I'm so going in.

Exhausting work

B's day today: 3 therapists here from 8-11, a different therapist from 12-2 and yet another from 2:30 - 6. He crashed on the way home from the park at 4:30 and was comatose for an hour. It might be a long night...

Sleep

B's new "job" is definitely disturbing his sleep (and mine). He has been a bit of an erratic sleeper for a while. His usual pattern involved going to bed at 8 and loudly entertaining himself until close to 10 but then sleeping until 7:30 or 8. His naps were all over the board. He seemed to still need one (demonstrated by the fact that he'd crash sitting up in the late afternoons or anytime we were in the car longer than about 3 minutes). But, it was hard to get him to take it. I could usually rock him to sleep if I timed it just right and he'd sleep anywhere from 30 minutes to 2.5 hours. A shorter nap seemed best.

In an effort to get as many therapy hours as we could, we didn't reserve time for a nap every day. He seemed to fall asleep fast and sleep better without one. He has really been all over the place these last couple of weeks though. He crashed for THREE hours last friday after a full week of his job. He has also fallen asleep late in the day (3:00, 5:00) and some other weird patterns. The worst part is that he has been waking up in the night again. He used to do this on a regular basis - practically every night. He doesn't cry but babbles, laughs, jumps and just generally makes a lot of noise for like TWO full hours. I am always afraid to turn off the monitor in case he does cry or say gets out of the crib (which he has never done). Ear tubes seemed to solve this. He pretty much stopped doing it after the surgery so we thought we had least had some evidence that he truly needed that procedure.

Apparently, sleep disturbances like these are really common in autism and some parents have it MUCH worse. There are kids who literally barely sleep at  night and keep the rest of the family up. The biomedical nurse that I saw suggested melatonin. Our pediatrician had also suggested that at one point when big bro. was having trouble adjusting to traveling. We have tried it 3 times. The first time was the day of the marathon nap and he was asleep in about 30 minutes - no way that would've happened otherwise. I thought we had found our miracle cure. But alas, he was awake in the night and up early. Same effect the second time. We tried it once more and it didn't seem to do anything at all. I'm not sure this is our answer. Maybe it needs to be used regularly or at a higher dose. Or maybe he just needs some time to get used to the new routine.

Add in a preschooler with a cold who (very pitifully) was up 3 times before midnight and you have one tired mama. I think I may have gotten about 4 hours of interrupted sleep last night. Before kids, I used to consider sleep my super power. I fell asleep quickly, could sleep 10/11 hours and STILL take a long nap. That all changed the day my first baby was born. I went for 2 days without being able to sleep until the nurse at the hospital insisted I take a sleeping pill (which still didn't work). All through infancy, I was never good at sleeping when the baby slept with either of my kids. I had a hard time falling asleep when I didn't know how long it was going to be before I had to get up again. I was never one to doze off while feeding the baby or to do it all in a dream-like state. I was up for a long while after most feedings. As they've gotten older, I have that same problem with falling back asleep if I hear them on the monitor. I lie awake the full 2 hours listening to B and turning on the video when it's quiet to see if he's asleep. And sometimes, my mind gets turning and I'm awake much longer than he is. I never knew sleep deprivation could last this long. I know I'm not alone though - I simply joined the ranks of sleepless parents everywhere. I'll sleep when they're grown... maybe.

Ingenuity

I gotta hand it to him. With no trains in sight, B just improvised with the next closest thing. See how the VERY large Thomas is "coupled" with a truck? Man, I love that kid.

Our morning therapy session  is over - we have another one in an hour and a half. I'm pretty sure the big trains and perhaps the tracks are next.

We knew it wouldn't be easy

Today was challenging. We met with our team this morning to talk about the parent involvement portion of this therapy, which is HUGE. We have 2 weekly meetings plus 2 hours of parent training EVERY week. It's a lot... and I don't have a full-time job on top of it.

After the meeting, I took my big boy to his first day of his Friday Morning out program. He did this last year so it wasn't much of a big deal but it still is weird to me to drop him off somewhere. It's not weird to him - quick hug and he is more than ready for me to leave. But it reminds me how quickly he is growing up.

After the drop-off, I rushed home to do a videotaped assessment with B. We had to do three 10-minute segments of play. The first one was B playing independently, the next was the 2 of us playing in the way he directed and the third was me directing him to play. It started out okay for about 1.5 minutes and THEN... he decided he'd rather go upstairs. And he just could not understand why I wouldn't go with him. He cried like I have never seen him cry before. He even tensed up and kind of threw himself down - a behavior I have never seen from him. It was awful. Ten minutes felt like an eternity. I was able to engage him in the toys for a minute or two but then he'd just get even more upset. We have some nice footage of him crying... in no way indicative of the way he plays. In short, it sucked but we got through it and he was rewarded with his coveted Thomas videos.

And on the subject of trains, here's a doozie. Our team wants to try limiting his access to  his prized possessions. Trains are his world and it's pretty clear that they are distracting him from being able to learn. They want to test using them as reinforcers meaning that he gets to play with them as a reward for a specific skill or behavior and not just play with them whenever he wants.  On Sunday night, we will hide his enormous bin of trains and see how it goes.  Here's hoping he's "motivated - not miserable" as our therapists are aiming for. We have a pretty intensive week of therapy so at least we won't be alone in our efforts. Poor B. It just isn't fair that he has to work so much harder for the things we take for granted.

Reflections/Early signs

For some reason (likely because I am neurotic and like to torture myself), I have spent a lot of this waiting time thinking about the onset of B's autism. He did not have the type of regression that you hear about where the child is developing totally normally and then starts to lose skills like language, play etc. And I definitely did not "just know" that something was "off" the way many parents do. When we first started using the A word, I was pretty positive that there was nothing distinguishable about B other than his late language acquisition. And, to be fair, it isn't unheard of for a 2 year old not to be talking. I couldn't think of anything else that was different about him.

B's autism did not present itself in a typical manner - at least not in anything I've read about. His primary "symptom" was excessive happiness and silliness... what parent would worry about that? When we were first going through the quest for answers and diagnosis, I spent considerable time looking back through all of his pictures. There he is, looking right at the camera with a huge smile on his face. I couldn't find any where he was looking sideways or off in his own world. This could of course be due in part to the digital camera age whereby I take 30 similar shots and delete all but 2 or 3 of the good ones. But I don't think so. He truly was always happy and smiling. Friends told me how lucky I was to have such a happy baby.

More recently, I've looked back at some video clips which are a little more telling. Admittedly, my organization of our videos needs some work - we have about 10 tapes that we haven't done anything with other than record the footage. So, I haven't looked at all of that. But I do have some quick clips on Youtube that were taken with my regular camera. There is one of his first bday where he rocks very briefly in his chair. Maybe that was autism. Maybe it was just something a one year old does. And there's a video of him running back and forth in our living room over and over and laughing hysterically. Autism? Or typical of a 1.5 year old? I don't know. He still does these things now and they are more pronounced and more obviously different than other kids his age. But back then, I'm not sure anyone would've picked him out.

Thinking back, there may have been some clues to the puzzle. I do remember complaining that he was really hard to teach. He didn't ever seem to be proud of himself when he did something and it was SO hard to keep his interest. He would acquire a new skill like waiving or clapping and we would see it once or twice and then never again. He didn't seem to seek out our approval. And he never pointed at things or brought us things that he found interesting. I never gave it a second thought. Life was so busy just trying to keep up with the 2 little ones. Happy, well-rested, well-fed boys was a successful day in my book.

So I'm really not sure when this started. I thought he had progressed completely normally until about 18 months old and then lagged behind with language. But maybe he was born with it and the symptoms just didn't manifest until later. I really don't know. And I'm not sure if or why it matters.

Likely a trained professional could've identified his disorder much sooner. I have heard of kids as young as 15 months getting the same type of intense intervention that we are doing now. Yes, 15 months. Even if it may have helped him recover or improve sooner, I'm glad we didn't know then. I'm glad we had 2 years. Two years of our "normal" family with our 2 "perfect" boys. Two years where I didn't study everything he did and wonder what it meant. Two years where I didn't see anything wrong with his silliness. Two years without the nagging worry. Because this path is considerably harder. And sometimes ignorance truly is bliss.

Away we go

I guess it's safe to say we're up and running with B's ABA. It has been a busy week to say the least. We had an intake appointment on Tuesday morning (complete with paperwork that rivals buying a house) and then have had daily assessments the rest of the week.

So far so good. This has definitely been a case of prepare for the worst and hope for the best. I am pleasantly surprised. I kind of thought he would spend the bulk of his time crying. Instead, I saw laughter, giddiness and glee (with some occasional tears of course). He seemed to THRIVE on the attention of these very skilled ladies. I also expected to have a hard time watching the assessments conducted. This was very different this time around too. I already know what B can and can't do all too well. Months of evaluations will do that. So it didn't bother me to see them asking him to label something or throw a ball (for example) and having him totally ignore it. I now see it as an opportunity for growth rather than a weakness.

The first time he was evaluated was heartbreaking. I didn't realize just how far behind he was. Think about it - you don't really sit around and analyze your kids skills when they are seemingly on track. I STILL couldn't tell you nearly as much about what my firstborn can and can't do as I can about B... he hasn't been under the microscope.  The last time around was also very confusing because it was hard to know how much he "could" do vs. how much he "would" do. I found myself testing him all the time looking for autism... if he did X, then he wasn't on the spectrum... oh but wait - he just did Z - maybe he is. In a 2 year old, there is a wide range of normal. It seemed like if you looked for it hard enough, you'd find autism in any kid. This is another reason why it took us so long to get to a solid diagnosis.

Really the only thing that was almost as tough as I expected was how to handle big bro. during all this. He really, really wants it to be about him. He too was thrilled to have these ladies in our home to "play" and it's not easy keeping him from eating up their time. I found myself having to try really, really hard to make Mommy as interesting of a play partner. But it's good for him too - he's going to gain some skills as well.  And they are fantastic at including him and making it fun for him as well. Plus, he will start preschool after next week and that (I'm hoping) will make a huge difference.

This is only the assessment period... we haven't started the real work yet. And it's the honeymoon phase - I had people in my home for 2-3 hours a day - not 6-8. I'm sure the tough stuff is yet to come but we're at least off to a good start.

I also made a trip to a biomedical practice this week to explore that side of the equation. I'm too overwhelmed about it right now to even write it down. One thing at a time...

Autism is not all bad

So, we are FINALLY (it seems we've been waiting forever) about to start B's behavior therapy. We have no idea how successful this will be but as we aim for "best outcome" and "recovery", I am thinking about all of the things that make the little guy who he is. And yes, these are all at least partially a result of his autism but I have to say, there are some things (quite a few in fact) that, if "recovered" from, I will truly miss.

#1. The laughter. Now, of course I know that B will always continue to laugh no matter what. But the way he laughs now, that all-encompassing, doubled-over, drunken laugh that comes out of nowhere and lasts for an insane amount of time? That I will miss. Seriously - I have listened to him laugh in his bed for HOURS at a time and even though he really should be sleeping, it always brings a giant smile to my face. I would bottle it if I could.

#2. His babble. You know how absolutely adorable it is when little ones start playing with their voices? They truly seem to believe that they are talking even though it sounds like a very bizarre foreign language. B's language has always been particularly cute in my opinion. It's almost musical. I have a lot of videos of him "talking" because it is so stinking cute and I just knew that it was going to give way to real words and we'd miss it. Little did I know. When he was initially observed and the ladies pointed out to me that this was nonsensical self-stimulatory behavior and not an effort to communicate, I was crushed. Had one of the things that I so loved about him really been a symptom of a disorder?

#3. His baby qualities. These are twofold. First, as soon as I pick him up (which he loves), he snuggles in and lays his head against my neck. It is the sweetest, most wonderful thing. If only he weren't practically as long as I am and over 30 lbs, I would carry him around all day. He and I both would love it. But oh my aching back. Second, almost every day - I rock him to sleep. He lays up against me and snuggles in while I sing or hum songs until he falls into lala land. The memory is a tricky thing when it comes to ages & stages, but I know that his big brother stopped falling asleep on us MUCH earlier in life. We took away his rocker with the arrival of a big boy bed at age 3. I remember that we were sad that we couldn't sit with him and read before bed but certainly not that he would no longer be rocked to sleep. I doubt there are many almost 3-year olds who still allow themselves to be babied this way.

#4. The lack of sibling arguing and fighting. I have enough friends with kids to know that this is a HUGE struggle in most homes. I can only imagine what it would be like here with 2 "typical" boys only 15 months apart and interested in the same toys. I would be referee - that's for sure. In our house, it goes mostly like this - Big and Little brother have different primary interests which keeps one mostly playing with cars and the other with trains. However, when they do want the same thing, B-man will either cry (in a sad, tortured way- not in the annoying whiny way) or he just moves on. Again, this isn't a good thing - B should hold his own and his big brother shouldn't be able to play at home any differently than when he has to share with playmates but it does make my life easier.

#5. Along the same lines (and I hope this doesn't make me a bad mom), I can not imagine having the CONSTANT questions, talking, complaining, negotiating, mommy/mommy/mommmmmmmy-ing that my first son exhibits. Do not get me wrong - I LOVE and adore my big boy to bits and pieces but he.never.ever.stops.talking! from the minute he gets up until the minute he goes to bed. It is exhausting and if it was coming at me from 2 directions, I might just lose my mind.

#6. Tantrums or lack thereof. My little one really doesn't tantrum. He cries with big crocodile tears like his heart is breaking sometimes but he does not throw himself on the ground kicking and screaming because someone looked at him funny or some other grossly exaggerated perceived injustice. I've seen some doozy tantrums from my son and from many a 2 and 3 year old and B just really hasn't ever had one. I know now that this is because we keep him in his comfort zone. He's very easy-going and it's pretty much second nature to keep him happy so that's what we do. I anticipate his needs and I meet them before he ever really has a reason to be upset. This is going to be a huge change as we undergo constant therapy where he has to come out of his comfort zone. I anticipate tantrums like I've never seen before and it's one of the things that scares me the most about this next step. But - tantrums are good - they are a normal, healthy part of development and we all live through it. Someone remind me of this later.

#7. Finally, this is one that I don't expect will ever go away but it is something I consider to be a blessing of autism. And that is that we celebrate and appreciate every single little accomplishment or development in an intense way that is just different than with typically developing kids. Hard to believe, I know. Let's face it - we all think our little offspring are amazing and do cuter and smarter and better things than any kid who has ever come before them. But when your kid still isn't talking and is almost 3, an attempt at something as simple as copying a one syllable word you've said is H-U-G-E.

Now, on the flip side - there are many, many behaviors and traits that I DO want to see change or simply go away and that list is growing. But it is my fervent hope from every part of my being that we will see the following 3 results:

#1. Please, please, please let him talk and understand what is being said to him. Some kids with autism are forever nonverbal. I can't bear this thought. I just feel in my heart of hearts that he has it in him. I long to hear his voice and to get to know him in a way that only comes with communication.  We have waited SO long to hear him say Mommy and Daddy.

#2. I want to see my kids play together. Yes, this goes against my 4th point above, I know. I will take the fighting - really I will (again, remind me later). I just want my boys to have a relationship. I want them to entertain each other instead of always needing me. I am not naive enough to believe that they will be each other's best friend but sibling relationships are important... isn't that one of the reasons we all decided to have more than 1?

#3. I want B to take an interest in the world around him. He is not stuck in a sad, isolated world of his own (as I thought autism meant) but he does not participate in things the way he should. A recent example... I took the boys to an aquarium. B never cried or complained but he did NOT want to get out of his stroller and pretty much was just along for the ride. He could've been anywhere - not one single thing piqued his interest. It's a heartbreaking thing to watch. I am painfully aware that I sounded and looked like a crazy woman "LOOK at that FISH - wow - have you ever seen anything like that. Look OVER THERE. B.? B.?" You get the drift. I want him to have fun in the way that other 3 year olds do. My big guy was filled with wonder and delight and I want that for B too.

The Laugh

Background

Here is something I wrote for a friend's site: it is the first time I wrote about our story and I found it therapeutic. It's what prompted this blog:
http://www.charlottesmartypants.com/2010/07/a-smarty-moms-autism-story/