Swimming observation

On Monday, we had a sick therapist so B got to do what most little brothers do: tag along for big brother's activities - namely swimming. Fortunately, we also had our PCA booked for that time so we had a 1-1 ratio. This proved to be a very good thing.

B has been to swimming one other time but sat in a stroller in the observation room. This time we didn't bring a stroller and brought him right up to the side of the pool where other family members sit. He got his own little chair and very happily sat and had a snack. He seemed pretty interested in what was going on. And then he finished the snack and apparently decided he should be in the water too. Thank goodness our pca is quick on her feet. The last thing we need is for him to fall in, fully clothed. It was pretty surprising given that we had to actually target water activities and tolerance over the summer and how he has protested the bath off and on. He is now loving the bath again so I guess it makes sense. I just wasn't prepared for him to be that interested. He leapt up one more time and almost made it in before our PCA took him out for a walk.

After swimming, he played on the little rides and RAN around like a crazy man. (the boy clearly needs more physical outlets now that he isn't outside much).

All in all, it was a good outing. Maybe we'll add swimming to our goals...eventually. The shot below is a little blurry because he was happily kicking his feet. See that glimmer of mischief in his eye?

Santa visit

A couple of days ago, we had a free afternoon and took the boys for their annual Santa visit. Since the 5 year old is getting older and wiser and oh so inquisitive, I thought it would be safest to see the same Santa as last year. We took the giant double stroller but made B get out and walk through the little exhibit they have at the Macy's downtown. He. did. AWESOME. So much more engaged and interested in his surroundings this year. He willingly climbed up on Santa's lap and played with his beard and costume. We walked through twice (no crowd) and everything was easy and smooth.

I think what I'll remember most from this year though is when Santa was trying to have a hushed conversation with an oblivious B and his big brother leaned over and said "he doesn't know many words. But he knows a lot of words - just not SO many." I love how he was sticking up for the little guy.  Our pictures are always so-so at best but at least we have them and a nice record of how big they are getting each year.

One year in

On 11/22, we had our third 6-month review with our therapy provider. In actuality, it was a review of a little over one year since the first review was after only a couple of months. This spanned Sept 2010 until November 2011.

This last 6 months has been really huge for B. A couple of really key things have clicked: imitation and VERBAL skills like requesting and imitation. He has also made some huge strides in self-care. (NO MORE DIAPERS!!) So,  I was thinking we'd have a fairly positive review but I still felt like it was unlikely that we'd be looking at "best outcome" results. Remember those boxes they check in these reviews that indicate where the kiddo is tracking as far as outcome? Last time, he was "progressing" but did not meet the criteria for any of the 3 best outcomes. This time, he moved UP into 2/3 best outcome! This is amazing news.

Developmentally, he gained an average of 1.4 months of development for every month. This is the ticket. This is why we are working so hard and so intensely. In our initial review at intake (2 months shy of age 3), B was at a developmental level of a 5 month old! This was hard, hard news to hear. Shocking, actually. His cuteness and young age masked the autism in many ways. Now he is around 24 months. Still 2 years behind but he is learning faster than a typical rate. His IQ equivalent is actually increasing! Our team pointed out that this doesn't happen with "typical" people... if we measured our IQ at age 5 and again at age 30, it'd be roughly the same. And they admitted that they were pretty uneasy about B's prognosis in the beginning because his IQ score was actually really, really low. We believed and still believe that he was at a much higher level than the testing showed. We have a smart little guy on our hands - we just have to figure out how to teach him. Nonetheless, he clearly had a huge developmental gap.

And the best part... they have a chart that shows his progression IF he continues learning at this rate. It's 3+ more years of this hard, hard stuff but it showed him CATCHING UP! As in going to school, as in functioning at the same level as his peers. It's a lot to hope for, yes, but it is invigorating. This is not an easy lifestyle and it definitely takes it's toll but we will happily press forward if it means a better life for our precious boy.

All in all, we felt re-energized, hopeful and so very proud of our little man.

We have lots of new goals and a new focus to try to combat all of his many self stimulatory behaviors that are developing and interfering. But we have renewed hope, a great team and one very special little boy in our corner. I'm hoping for an even better review in 6 months!

4 year Dr. visit

This morning, B-man went to his primary care dr. for a 4 year-old well check. Last time we went to the dr., it was hard for him (and me). They couldn't even weigh or measure him because he was crying and freaking out. And he really, really wanted out of that office. So I took our senior therapist along for back-up. In what has become typical of B whenever I am worried about how he'll do, he was a complete champ. We opted to leave the stroller in the car and he happily went in to both the main office and the exam room. He followed direction and got his weight and height checked as well as blood pressure, eyes, ears, mouth. He did great and the dr. was impressed. He even repeated her sentence one time.

Here are his stats along with his big brother at 4 (in parentheses)

Weight: 38 lbs, 50-75% (36 lbs, 50-75%)

Height: 42", 75-90% (39 5/8", 25-50%)

BMI: 14.9, 10-25% (16.1, 50-75%)

It would appear that B is going to be Tall like his daddy. He has had a big growth spurt this last year. At big brother's FIVE year check, he was the same weight and 1/2 an inch shorter.

Our primary topic of conversation and concern revolved around B's diet which admittedly is atrocious. Unfortunately, there are no magic solutions. B is so picky and it's difficult to introduce new things. He won't even do a different BRAND much less a new food. But he's healthy, he's growing and there's only so much we can do. We'll keep trying. One day at a time.

It was comical some of the questions the dr. asked. She clearly doesn't know B at all "is he aggressive with his brother?" The kid does not have an aggressive bone in his body. And she seemed shocked that he is potty trained at night and so on track with so many of the physical milestones. She remarked about how calm he acted. He is such a good boy. When I think about all of the challenges we could face with this diagnosis, we are very lucky that he is who he is.  I can handle food and communication challenges. I'm not sure I could handle an aggressive, unhappy kid. Luckily we don't have to.

B-man is FOUR

B turned four yesterday. Since he had a pretty full therapy day, we celebrated on Sunday. We took him for pancakes around 11 but since there was over an hour wait at our usual pancake house, we went to Cheesecake Factory instead. Our insanely picky boy didn't like their pancakes and ate about 2 bites. He was thrilled to be out of the house though so I guess it was still a treat. He had a fun-filled day with lots of trains, lots of presents and cake. Cake for dinner actually since it was a food strike kind of day for him. On the bright side, he totally got into presents this year! He was all the way down in the basement and all I had to say was "do you want to open presents?" and he came running. Boy his receptive language has come a long way!

I'm so proud of how far he has come in the past year but this was a hard birthday for me. I know lots of moms have trouble with birthdays because they want to hold on to their babies. I thought I might be that way since I have always been baby crazy. That hasn't been the case at all for me though. I love each new age and I am excited about the changes and developments at each stage. With B it's different though. The one thing we had on our side was that he was so young when we sought treatment. Early intervention is so critical to outcome and it was always encouraging to hear things like "he's so young - we have no idea how much he'll change in the next year". Yes, 4 is still young but I feel like we're getting out of the window. For some reason, 3.5 stands out in my mind. I had hoped he'd be talking by 3.5. I had hoped he'd be catching up. Instead, the older he gets, the larger and more apparent the developmental gap becomes. I want to keep him young so we have more time. And I want to keep him young because it's just easier. It's still somewhat socially acceptable and manageable for him to act the way he does. It's okay if he doesn't answer adult's questions when we're out (he must be shy) or if he sings at the top of his lungs (so cute) NOW. How will it be when he's older? Four is getting close to school age and we are nowhere near ready. I don't want to discount how far he has come or how much I still believe in him. I just wish we had more time. I didn't expect to feel this way but 4 was hard. Very, very hard.

Still, B's birthday is a cause for celebration. How far he has come in this past year and how proud he makes me every day. He's a little warrior and we are just scratching the surface. Happy Birthday, little man. We love you so.

A few pics. I have video too - I'll upload soon.

No big deal

Once again, B surprised me today. After the circus incident where he had a hard time leaving the comfort of his stroller, we've been working on stroller tolerance. Today, we decided to go to the mall and test it out. Instead of letting B ride along, we put big brother in the stroller. We even broke the stroller down and carried it alongside and B did GREAT! He held my hand or our PCA's hand and walked with NO problem whatsoever. So while we were at it, we tried a couple more things: getting on an escalator (first time ever) and getting his foot measured. Nothing phased him. "No big deal" is our mantra when we challenge this little guy. Today he embodied that in a big way.

This morning, I volunteered at his big brother's school. I was in the 2-year old room. I can't believe how little they are at 2 and how much I've forgotten. It was a little sad to see that some of these kiddos (ok, most of them) are actually ahead of B developmentally. But all in all, it was an enjoyable albeit exhausting morning.

While it was a busy morning, there was a highlight. When we were on the playground, my big guy came out with his class. He was SO excited to see me and SO sweet. When I left, he shouted "I love you, mommy." Even though he was in a huge group of peers. I'll hold on to that... for the days when he is driving me crazy and for the teenage years when the sight of me fills him with embarassment. It warmed my heart.

Bathing in his bday suit

B seemed to be in an especially good mood today. So at bath time, I decided to just go for it and skip the bathing suit. It has been several weeks and the bath has gotten easier but I didn't want him to get dependent on the swimsuit (which is the only way he has willingly taken a bath lately). I took all of his clothes off while he was on our bed and he did cry but he wasn't fighting like he did before. Again, in the tub he cried and cried but he sat right down and I could just tell that he was going to be ok this time. So I waited it out and sure enough he got over it. He even enjoyed it. Actually, he didn't want to get out. Score for mom.  And now that he has done it, there's no going back. At least in my mind. He may disagree.

He also has made amazing progress in potty training in the last week. He went from 8 accidents (all #2 unfortunately) to 1. I think he's getting it. This week, we're going to try to train him not to remove all of his clothes every time he pees. This too will be a battle but we can do it! We also started putting him to bed in underwear. Amazingly enough, he has never had a nighttime accident so it was just our own paranoia keeping him in diapers at night. We are officially DONE buying diapers!!! More money for therapy.

Assessments, haircut, chuck e. cheese and more!

Coming off of a great halloween, we've continued our success this week.  It has been a busy one (aren't they all?). B has been having lots of assessments conducted this week since our next 6 month review is coming up. Things are looking good. He mastered the ELM (stands for early learning measurement, I think)!  That is one that the kiddos in the original Lovaas study had to have mastered by 3.5 years old in order to attain best outcome. We're just behind that but it's still good. He overall has been testing really well all week. It's exciting to watch. He has improved in so many areas and yet still obviously struggles. I watched him scribble circles every time he was asked to imitate drawing a horizontal or vertical line. This despite the fact that we have practiced this for months. He has grown by leaps and bounds though in so many areas. Today, we did the 3rd installment of his video assessment with me. The first one - he cried the entire 30 minutes. Last time, he was much improved but was off in his own world a lot of the time. Today, he complied unbelievably well with playing with me and it was just such an obvious improvement! He is a changed boy.

On wednesday, he had his last afternoon off for a while. We took him for a haircut and he was a total Rock Star with it. So we followed it with a trip to Chuck E. Cheese which he LOVED.  Also this week, we've gone back to a more hard-core approach for potty training since we are struggling with #2. I'm happy to say that he hasn't had an accident since Monday. All in all, a very busy but very great week for us!!  Tomorrow morning, I go to a meeting about funding. I'm not excited to hear what that's all about. Please, please, please don't let anything happen to our funding. This boy NEEDS it and is thriving from it!

Pictures below are post-haircut (she put in product which looked adorable but isn't exactly realistic) and smiling from ear-to-ear at Chuck E. Cheese.

B trick or treats!!

Halloween kind of lost its appeal once I stopped trick or treating. It hasn't been my thing for a long time. No costume parties for me. And then I had kids and I do love dressing up my little guys. With the exception of last year (which was right after we started therapy and Halloween was barely an afterthought), I have loved choosing costumes and dressing up my little cuties. I figured this was likely the last year where I had much influence on their costumes. Even at 5, I had to beg and plead to get my big guy to be something other than an Optimus Prime transformer!

B's history with Halloween has not been entirely favorable. At age 1 (almost), he was an adorable monkey who strolled along while big brother walked the neighborhood. At almost 2, he freaked out whenever we went up to a door and we ultimately gave him a pacifier and took him in early. Last year, at 3 (2 weeks shy), he again sat in a stroller and was perfectly content so long as he never had to get out of it. Needless to say, my expectations this year were low. I was expecting to have difficulty getting him in costume and not really counting on even part of it staying on long enough to get out of the house. And I figured we would either have to get a stroller for him or that he would be tugging and pulling on us all night to try to go home. Boy was I wrong!! He seemed to LOVE it! He actually wanted to go up to the houses and he picked out a piece of candy at each place and put it in his pumpkin. We didn't teach or practice this. He seemed to catch on that the kids were saying something as they went to houses but he is more likely to repeat the last thing he hears so we heard a lot of "you're welcome" rather than trick or treat. Kind of adorable, actually.

Big brother had a killer time too. I love how he said thank you each time and was so much bolder this year than last. And when asked who he was, he would tell everyone his real name, hesitate and say "and Woody". Super cute.

I am seriously beaming with pride. I need to stop underestimating this little dude.

Here are a few pics. Yes, I'm biased but I thought they were extremely adorable this year:

Circus days

On sunday, my mother-in-law and I took B to the circus. I thought long and hard about this beforehand. Let's face it: circus = sensory overload even for us grownups! I didn't know if he'd be able to handle it. But we did it and for the most part, it was a success! He had a little trouble transitioning from the stroller to our seats and I had the pleasure of carrying a very uncooperative 37 lb boy and a stroller! And he really wanted to sit on the cement stairs instead of our seats (see pic below). But he seemed to actually like the music and the lights. He smiled, he snoozed for a bit, and he generally did great! We left at intermission because both he and big brother were ready after 2 hours. Three and a half hours is WAY too long for a kids show! I may remember the stroller tantrum for a while but I'm thinking the memory of my sweet boy snuggled on my lap while my other sweet boy beamed beside me will last much longer. We conquered the circus. What's next?

Goodbyes

I hate goodbyes. I've moved a lot in my life (this is my 7th state) so I've said a lot of them.  They don't get easier. Today we said goodbye to another one of our amazing therapists. That too doesn't get easier. In the last year, we've lost 5 staff members and one PCA (personal care assistant). It's sort of the nature of this relationship... high turnover. It makes sense as it's primarily an entry-level job and an intense one at that. Burn-out is high. It's also policy for the kiddos to change therapists fairly often so they don't become dependent on a certain teaching personality and can generalize to others. We knew all of this upfront. But these people are in my home for 10+ hours a week and interacting with my family. They play an incredibly important role in my baby's life. Thus, it's nearly impossible not to get attached. I am trusting them with what matters most to me. They are changing my child's life. I will forever be grateful to each and every one of them. We will move forward but we will not forget their contributions. So, thank you. You know who you are.

Special siblings

Last monday, I was outside raking leaves with my big boy - B's older brother by 15 months. He was lamenting about the fact that all of his neighbor friends were in school. And then he about broke my heart in two when he said "B doesn't know how to play or even how to talk. I have no one to play with." Ouch. That one hurt. It was a painful reminder that he is much more aware of B's differences than we give him credit for.

I've thought about that comment a lot since then and I was able to come to terms with it when I thought about all of the kids out there who have siblings 3 or 4 years younger than them. It is years before they have a playmate. Or the only children. Or the kids who do have siblings but all they do is fight.

It still hurts. Here we have what should be an ideal situation - 2 kids of the same gender basically a year apart... a built-in playmate. And yet, that's not reality here. Sometimes the big brother tries but most of the time he just ignores little B. Fair? No.

Then on Thursday, one of the moms at preschool that supervises him at "lunch bunch" pulled me aside to tell me that my big guy has "such a tender heart" and is "such a sweetie pie". It's true - he is a gentle, sweet boy. Exactly the kind of heart that a special needs brother should have. So while it may not be fair, he is already better for it. Our job will be to foster a little extra compassion and tolerance and to temper any resentment. And maybe someday he'll be thankful for the lessons B taught him. He's teaching him much more than playing together ever could.

Today, I'll be having waffles

The most important thing we can do for B right now is to teach him the value of communication. To that end, anytime he talks, he pretty much gets what he wants. We'll of course have to scale this back (perhaps sooner than later) as he catches on but for now, nothing is too over the top. Today, he asked for waffles. I lost count at 8.  Yesterday, he ate apple bread for dinner. To be fair, his diet is far from well-balanced and healthy even on his good days. So what's the harm in a few extra waffles? He ASKED for them!! Don't tell B but we'll pretty much give him anything he wants if it means he'll learn to talk.

The power of "no"

Ask parents of most 2 and 3 year olds and they will likely have strong feelings about the word "no". At those ages, either the parents or the child (or both) are probably uttering this word almost constantly.

For me, there are a couple other words that bother me more. One is "autistic". I hate that word. You will never hear me use it. I realize it's just semantics but I view B as "having autism". It's one characteristic amongst many that make up him as a person. When he is called "autistic", it sounds like an all-encompassing label as if that defines him. I don't know if any other parents feel that way or if it even makes any sense but that's how I feel.

The other word I can't stand is "typical" and I know that I have been guilty of using that one. It's often a way of discriminating between a special needs child and one who is neurologically typical. But there is nothing "typical" about either one of my kids (or any child for that matter).

Okay, I'll get off my soapbox now and back to the topic at hand. I think B is figuring out the meaning behind no. He used it very appropriately to communicate today. I kept asking him if he needed to use the potty and he would say "no". This is totally new for him. I wanted to test it, not really believing that he knew what he was saying. We went for 4 hours between potty times when our normal schedule is 2.5 and at 4 hours, he willingly went. He also used it to refuse his lunch when it was ready, to say he didn't want to go to bed, and a couple of other times today. If he really is figuring out how to tell us what he doesn't want, this could be a huge breakthrough. AND if he actually knows when he does and doesn't have to go potty, this too would be a monumental change. We shall see.

Couple more updates: he took a bath with the help of a swimsuit. For now, that is working - at least it eliminates the screaming. Hopefully we can lose the swimsuit soon.

He "read" that Thomas book during my parent training on Friday so at least now our 2 supervisors have seen it and know I'm not crazy. I bought a couple more books this weekend that are similar so we'll see if it is just that book or if something is happening here.

Just another boring day in the life...

Good and bad

Here are some highlights from the last two days:

1. I checked with the staff and no one has read that Thomas book to B that he read/recited. = Good. Still really weird but good.

2. B FREAKED out about the bath last night. I had to hold him back (not easy - he is strong), he climbed out twice, never sat down and cried/screamed for 15 minutes solid. = bad. very bad.

3. We went to a park this afternoon for a couple of hours. B played and had fun. No meltdowns. = good. He did retreat to his stroller for a good part of it though = bad.

4. I dropped his last pacifier behind the bed and picked up 2 new ones today. My plan is to get rid of it completely once we get past our xmas plane trip since I want it on the plane. When I tried to give him the new one tonight, he rejected it. We might be all done with pacis now. = good (except for that xmas plan trip I mentioned).

5. No #2 accidents in over a week. = good.

6. After putting him to bed, I heard a lot of noise in his room. He had turned on the light and was looking at books. = mostly bad but I did like the sheepish grin he gave me when I caught him.

7. After a LOT more noise, he opened his door - meaning he figured out how to get the child lock off. He opened it, looked at me and closed it again. I guess he just wanted to try it? This could be the beginning of a lot of fun bedtime rituals. = BAD. BAD. BAD.  Gotta admire the kid's perseverance though.

Reading?

Today, I gave B a book to flip through which is something he enjoys. This was a new one - one my mom brought with her last week when they were here. I have never read it. So imagine my surprise when he started reading/reciting entire pages! "Move!" says Thomas. "Moo," says the cow. "No, no, no!" says Thomas. "Not moo. MOVE!"

He "read" about 5 pages and didn't skip a word.

Fascinating! I of course don't think he is actually reading (though I have heard of kids with autism reading before they are talking). I think he has memorized the book. What is interesting is that it can't have been read to him very many times. I'll have to check with the staff tomorrow. I think he just has an amazing memory. We have seen him pick up songs after listening just once or twice and he repeats phrases from shows (echolalia or repeating things out of context is another common part of Autism).  This weekend, he walked around saying "where are you?" and "I love you". Totally random sayings that he must have picked up from somewhere.  But this is a kid who doesn't typically use more than 1 word at a time.

Regardless, it was so cool and I can't wait to figure out how to expand on it. I've said it before but this kid is just bursting with potential and we are not going to stop until we tap into it.

Time flies when you're...

having fun? I'm not sure if that's truly the reason but time is certainly flying. It's probably more accurate to say that time flies when you are insanely busy all the time. Our days go by in the blink of an eye and we are completely beat at the end of each one. So that's my excuse for the lack of updates on the blog this month.

I don't have a lot of new updates. B continues to do better and better with verbal requesting. He does it spontaneously a lot of the time now. He always says "come" now rather than just pulling me around. His goal is now something like 20 requests per 3 hour therapy session and he is having no trouble meeting that! We also have a couple of new verbal programs where he labels things. Such great progress on that front.

Potty training still continues. He doesn't have accidents but it's not clear yet if the initiation part has clicked. Right now, it's still totally our responsibility to get him there on a schedule and keep him successful but we're working on it.

We've had family visitors, outings and lots of tolerance activities and he's doing great with everything.

We even got him off the mattress on the floor and into a real, live twin bed! He LOVES it!!

I'm sure there is much more - this is why I need to post more frequently. October will be better. I'm going to try to do more pics and videos.

In the meantime, here is a little snippet of B doing a couple of his "programs" for me. This was shot on 9/2 so almost a month ago. Already, he has progressed pretty substantially from here. Keep in mind that imitation and language (both receptive and expressive) have always been his biggest challenges. So, what he is doing here is AMAZING to this proud mama!

Language explosion

So that vocal requesting program that I mentioned? B is blowing our socks off! He is repeating EVERYTHING right now. He still has a long, long way to go of course but it's pretty exciting given where we were until very recently. Today, he had a break from 11-12 so I seized the opportunity to get him out of the house. My PCA and I took the boys for pizza at Target (not much you can do in an hour when it's HOT outside). B was excited to be there but started to cry when the pizza was in front of him. I think he thought it was going to be hot. So, he looks at me and says "take a bite" TWICE. I have a witness. After I took a bite, he dove in and polished off the whole thing. Those 3 words are crazy cool for a couple of reasons. 1) THREE words: that's a sentence in my book. 2) I didn't model it for him. I said "bite?" and he came back with a full sentence.  I'm sure he was echoing what I have said a million times to him when giving him food.

Tonight, we were watching Toy Story 3 and I kept pausing it and saying a word. EVERY single time, he pointed and repeated it as closely as he could. Even new words for him. This seems like such a simple thing but it is not something he could do. Not even close. In the past, he would've either totally ignored me or cried.

This next week is going to focus even harder on his language because, as our team leader put it, his language is "exploding" right now. Woo hoo!!

It's particularly cool that this is coming off of such an intensive period of potty training. Typically you don't see a big acceleration in another area when something is focused on so heavily.

On the (unfortunate) flip side, we have one other big area to focus on as a result of the intense potty-training time-out from therapy. B's stereotypy & stim behaviors are OUT OF CONTROL! Left to his own devices, he would happily run directionless for hours on end while flailing his body and singing or laughing. It has become increasingly difficult to get him engaged which hurts his progress.

So this week we focus on those two things and see what happens. He does have a 3 day weekend without therapy so that may factor in too.

But did I mention that he is having a LANGUAGE EXPLOSION???? GOOOOO B!

Such a good boy

I'd say B is potty trained! He hasn't had an accident in about a week and really he only had a handful of them in total. He's still on a schedule and the bulk of the work is on us but still this is a pretty huge accomplishment for all of us. It is now his routine to get up and go first thing in the morning and we've added "pee pee, poop, and potty" to his ever-growing repertoire of words. Now we'll wait and see if he starts to initiate going vs. adhering to a schedule. Either way, it sure beats diapers!

And we had another successful haircut! He was a complete angel. I took along his pacifier (which was no help in the past) and he just sat there quietly until they were done. Maybe we're past that hurdle?

Therapy is back to full speed and we have several new people on staff so it is busy to say the least. B is doing great! The most exciting new program is a vocal one... we brought back vocal requesting. We had previously tried to do this in conjunction with his PECS pictures and met with mostly frustration. Now, I'd say he is successful the majority of the time. He has even requested a few things totally on his own "I want applesauce". Mostly, we offer the label "want a snack?" and he repeats it "snack". Months or even weeks ago, he simply would not do this. It's big, big progress. He is a little parrot repeating hundreds of words at this point. Progress. Slow and steady but boy is it progress.

weekend #2 of potty training

I'm feeling a lot better going into this weekend than I did for the last one. It's just me and hubby too - no other reenforcement. But the hard work is paying off... I think we have B on a schedule! He seems to get it now. We put him on the potty and he goes immediately. No more of these potty camp-outs where we wait for hours at a time for him to eventually go little by little. He seems to have good control and is even staying dry at night most of the time (HUGE bonus!). VERY few accidents.

He doesn't yet request to go. We anticipate his needs based on a loose schedule and on his body signals. Hopefully he'll connect the dots and ask to go at some point. He may not - some kids on the spectrum never do and rely on a schedule and self control in between those scheduled times. Time will tell. In the meantime, I am feeling really good about our progress. He is back to doing therapy and wearing clothes! And he is no longer crying or whining. He gets it! He's a big kid now. Our next step is to actually get him out of the house (other than the back yard). The poor kid has not been anywhere in almost 2 weeks! And I haven't changed a diaper in 11 days.

Potty Party. Day FIVE.

So here we are on Day FIVE of our little "potty party". The hope was for one, maybe 2 days of the sitting on the toilet marathon. But here we are. It's not that B isn't doing a good job - it's just that he has a bladder of steel. We know from the whole philosophy behind ABA therapy that kids with autism need a lot of repetition before they learn something. Hence the 40-plus hour week of therapy. We teach and teach and then teach again. Same rules apply for potty training. The trouble is that he only has to go a few times a day so it's taking a while to get that whole repetition thing going. He literally has spent the last FIVE days on the toilet for close to his entire waking hours. He gets breaks and we're trying to make those longer and longer as we get used to his signals and times that he needs to go. Still, he is on more than off (like 8 hours on and only 4 off) and an adult has to be within arm's length of him at all times.

Today was his best day by far. Zero accidents and 5 successes. He made significant progress. And he has even been staying dry at night! (He took pull-up off one night). My dear hubby is swamped with work (which is AWESOME news given that he just embarked on a new career adventure) so we've called in reinforcements. Our PCA was here with me from 9-4 and our head therapist from 4-7. With another kiddo, it's imperative that we have 2 adults present to keep up this vigil. Tomorrow, I'm on my own from 8-10 but hopefully we'll have another day like today or even better. We try underwear tomorrow... did I mention that B also has been sans pants for 5 days? And we try to make his time off the pot much longer. And hopefully next week we'll be able to bring back some of his therapy programs into his days.

I am in awe of his compliance and tolerance through all this. He is the biggest trooper I know. Go, B, go! NO MORE DIAPERS!

Potty training sucks

It just does. And it sucks the life out of parents. Today was pretty intense - particularly the second half. It doesn't help that little B decided to wake up at 5:45 this morning so we were exhausted at the start. And he woke up totally soaked so he didn't really need to go for quite some time.

I was amazed how compliant the little guy was. He literally spent from 7:30 a.m. until 5:30 p.m. in my bathroom and on the potty except for 5 minute breaks every 20-30 minutes. He ate a LOT of salty junk food: chips, goldfish, McDonalds fries & nuggets. But he didn't drink all that much and he didn't go that much. It was tough to get him to make the connection when there weren't many opportunities to be rewarded. We learned a few things: he is scared of the whole process. He had a tiny accident on the floor during a break and literally jumped into my arms in fear. And he doesn't like an audience: each time he went, it was when the focus was off of him. His big brother wanted to be in the "party" too so we had 5 and 6 people crammed into my small bathroom most of the day. B watched movies, ate junk food and generally was pretty happy for what was a very long day.

By mid-day, he clearly was holding it and needed to go. That's when it got painful to watch. He was scared to go so he would trickle here and there but never enough to really reward him. He did seem to be catching on though and consciously controlling it.

We put him in underwear at the end of the day and then the accidents started. And boy did he hate that! He tried to clean it himself and cried. This boy does not like to be dirty. For the next couple of hours, I yo-yo'd him on and off the potty and ultimately gave him a bath where he let it all go (so to speak).

He did do it successfully a couple of times and there was definite progress made. Fun though? Um, no. I spent the last couple hours of his training literally hugging him on the potty because he wouldn't let go of his grip on me.

I think he'll get it. Along with everything else, it's just not going to be easy.

Potty party

Summer is cruising by and we've been busy (hence the lack of posts lately). Our big boy turned 5 last week and we've had visitors and just generally a busy schedule. Now we are looking at 5 weeks of essentially no schedule for my preschooler. It should be interesting figuring out how to keep him stimulated and keep us from driving each other crazy. Given all that, it seems like the perfect time to attempt potty training with B! Tuesday is D-day. We start with an all-day "potty party" whereby B will literally spend the entire day in the bathroom. We've been working up to it by putting him on the potty every couple of hours and practicing taking his pants off and sitting. But I don't think anyone can truly prepare for this. It's going to be fascinating. I definitely would not have attempted this yet on my own - how do you potty train someone who can't communicate that they need to go? We'll spend the day in the bathroom and B will be nude from the waist down and we'll pump fluids and hope that he figures it out.

We're not much behind schedule from our "typical" boy. He showed no interest and is incredibly strong-willed so I waited until he was 3.5 before I even started. And it was a looooong evolutionary process involving multiple training potties, pull-ups, refusal to "go" in public, relapses etc. etc. My expectations are not that high. But if we can get him out of diapers this young, that'd be huge. I cringe whenever I hear of an older kid still in diapers. I have a good feeling about my B-man. Here's to a successful party!

Grocery shopping

B is flying so quickly through his programs that sometimes it's hard for our team to keep up. This afternoon, they were literally out of things to do and suggested we do some sort of community outing since I continue to push for those experiences. Since I already planned to go to the grocery store, we took B there. Correction - we took B, big brother, a therapist and our pca. Nothing like bringing an entourage to shop for food. B did awesome - he happily climbed into the car cart when we got there and did all sorts of labeling when asked. Smooth sailing. And as a bonus, the girls bagged my groceries for me. The sales associate commented "wow - that's sure a luxury to have someone bag your groceries". Indeed - I would've killed for that kind of help back in the day when I was doing it solo. And I know all my mom friends would probably love to have that kind of adult-to-kid ratio. It definitely comes at a steep price though.

We have a new therapist starting on August 1st - a guy! It'll be nice to change things up for B and have a male teacher (other than daddy) for a change.

Don't give up

One of B's favorite new tunes is one from Thomas (the tank engine) that goes like this: "Don't give up. Show determination. Don't give up - you'll be a big sensation". It's adorable to hear him singing such big words and it's one of those songs that gets annoyingly stuck in my head. As I was humming it today, I had to laugh. It's actually the perfect theme song for life around here. We just keep throwing more and more challenges in our path and facing them with determination.

The biggest challenge right now has to do with an effort to up the "fun" factor of B's therapy time. The more fun he's having - the more he's motivated to work hard and learn. So we're restricting his favorite things to therapy time. It does seem to be increasing the value of his time spent there. The tough part is the rest of his time. Granted, he's in therapy roughly 7/8 hours a day. But that leaves a good 4-5 hours of downtime. He can't have his trains, his Ipad, his bed or his favorite shows and videos during that time. No downtime for B means no downtime for Mommy. It's tough. It feels like a constant dog and pony show trying to find something he might be interested in when it's so obvious what he actually wants. He will bring me to the TV, give me the remote and continue to gesture and push my hand toward the TV. Poor little dude. He's frustrated and I'm worn out. My only saving grace at the moment is that our pca is here practically full-time so she can share some of the "fun".

Tomorrow we start our potty training efforts. We will be checking B's diaper every 30 minutes to get an idea of his "patterns" and how often he is going. After a week, we'll assess whether he's ready to get started. I'm excited by the idea of being done with diapers - not so excited about the process of getting there. It was hard enough with our "typical" child.

The data looked good for this week though. He is talking up a storm - sometimes as many as 40/50 vocals in a session. We're about to introduce motor imitation. He has been able to imitate movements and sounds with his mouth lately which is ULTRA exciting. All the things that need to line up in order for us to really teach him to talk are starting to fall into place. It's soooo much harder than the way most kids learn and soooo much slower but it's happening. Slowly but surely. And we are not giving up.

Something's happening here

B is becoming a bit of a parrot. At times he is practically repeating everything he hears - even whole phrases. We put his PECS on hold and talked recently about finding another alternative communication device to try. And then he started talking more and more. He's not really using language to communicate yet but I am able to get him to repeat a request.
Me: "B, do you want a cookie". B: "cookie". It's a baby step but it's HUGE.

He had his ELM (early learning measurement) assessment on Wednesday and he gained ELEVEN new mastered skills. FIVE of these were vocal imitation. "Say Mama, say Dada, say Baby". Let me say that again. Vocal imitation. He has never done this before.

I wouldn't say the lightbulb has gone off yet but something is happening and it's very exciting. Our team leader said several times in our meeting that he is in a period of acceleration right now. I hope he keeps it up.

First dentist visit

Yesterday, I took B to the dentist for the first time. I was dreading it in a big way. A small part of me was hoping that it'd be another of those things I worried about that ended up being no big deal. But mostly I was dreading it and unfortunately, the dread turned out to be warranted.

I took one of our therapists along and big brother because he also had an appointment. We went a half an hour early in case B had trouble just being in an unfamiliar place. We had the lobby to ourselves and our therapist actually was able to do some therapy with him while we waited. He was very motivated to work because he was so excited to be out of the house. He did awesome during the wait period. He even did awesome going into the office. I brought his stroller and a whole lot of other goodies to try to keep him happy. He was willing to touch the hygienist's gloves and her tools but the minute she came near him to clean his teeth, he totally freaked out. We ended up with me in the chair, him lying on my lap and me holding his arms and head while our therapist held his legs and she and the hygienist tried to pry his mouth open. He cried the whole time and was red in the face and sweaty. I felt so bad for the other 3 year old in the office. I'm sure we probably scared him to death.

It was the dentist's idea to schedule the boys at the same time but that ended up being very bad advice. Big brother has been 2 other times with no problem but did not like the taste of the fluoride this time and was a little fearful himself. So before we were fully holding B down, I was going back and forth between the two of them and trying to console them. I didn't feel like big brother got the level of attention he needed or deserved. So now I know  and will schedule them separately next time.

Throughout this torturous procedure, they kept telling me that we could stop whenever it was too much. If they only knew how much I have to put this kid through on a daily basis, they'd know that was not an option. Plus, we were there and it wouldn't have made it any better to try another time. If anything, it'll likely be harder next time since he knows what to expect.

The good news is that both his and his brother's teeth look good - no cavities.  And we made it through and don't have to do it again for another 6 months. And he recovered very quickly.

I was strong. I have had experiences in the past where holding B down while he cries makes me cry too (blood draws, shots). I held it in. That is until his ultra sweet big brother said "mommy, is it ok if I get down from my chair to see if my brother's ok?". My eyes welled up quicker than I could answer him.

Time in the real world

I've been harping a lot lately about getting B out in the community more. I totally understand the rationale behind having him in therapy for the majority of his waking hours. He needs it and it's the most beneficial place for him to be. That said, I really fear that he is in a bit of a bubble and will lose his "public skills" (for lack of a better term) if he doesn't practice. Plus, it makes me much more nervous to take him when it only happens once in a great while. And it is sometimes a very great while: we have gone for a couple of weeks before without him ever being in the car. It's a crazy shift from our pre-therapy life. I think we're going to incorporate more community time in his therapy schedule soon. In the meantime, I'm just taking every opportunity (canceled shifts etc.) to get him out. This afternoon was one of those times. He was free after 11:30 and we hit the childrens museum with big brother and our pca in tow. All in all, it was a very fun and successful outing.

It has been a couple of months since I've taken him there but we used to go fairly often so it's definitely somewhere familiar. He was GIDDY when we got there. Uncontrollably so. There were a lot of differences in him since the last visit: some good and some bad. On the bad side, he has a lot more obvious behaviors than he used to. There was a lot of singing, a lot of jumping and flapping, haphazard running, putting water and toys in his mouth and absolutely no volume control. We got some stares but I am totally over that - he's so much more important to me than what anyone else thinks. It did make me wonder where all the other kids like B are though. Believe me, I can spot them now and aside from one kid with Down Syndrome, everyone seemed pretty darn typical there. My guess is they are either in full-time therapy too or their caregivers just don't bring them. It would be easier to stay home for sure.

Now on the PLUS side, he was more engaged than before. I remember going one time where I could barely get him to leave the security of his stroller. He still retreated there a couple of times but he was willing to try new things and he had a blast. He drove the bus which he hasn't done before, painted with water outside, built with legos and was totally mesmerized watching himself reflected on the tv in the music studio. I'm pretty sure he has never noticed himself in that before. On top of that, he transitioned seamlessly from place to place (not even "typical" 3-year olds always do this). And he had some great vocals "go outside, water, cup, turtle, bus, circle, all done". I even ran a few ABA trials successfully - this therapist mom is never off duty. We had one slight meltdown when we took big brother to McDonalds afterwards for ice cream. Believe it or not, it was because we tried to get him to taste ice cream. What kid cries over someone GIVING them ice cream? And I was really glad that we brought our pca. I still need to be able to give him my FULL attention because he takes off and needs constant supervision. It seemed much fairer for his brother to have someone giving him that kind of attention too - even if it couldn't be me.

Both boys crashed on the drive home. A good time was had by all. Here are some pics:

Driving the bus. This was cool: he said "beep,beep bus" while he was doing it.

 He wouldn't go in this turtle but he thought it was pretty cool nonetheless:

Painting!

 Big brother had a fabulous time too!

Finger food

B just ate his spinach souffle with a spoon! I couldn't believe my eyes... before now, he has considered this incredibly messy dish a "finger food". Actually, yogurt and applesauce are the only things he eats with a spoon. Everything else (well, all dozen or so things he actually eats), he does with his hands. I always put the spoon out and aside from playing with it, he always ignores it. And just now, all on his own, he used it appropriately for every bite. WOW! Maybe there's hope for macaroni and cheese too. I sure wouldn't miss cleaning that up!!

Haircut happiness

Haircuts have been a struggle for the last couple of years. B was great for the first few and then... He. HATED. Them. He was like a different kid - crying, fighting, struggling. I would totally dread taking him every time and have to summon my courage. I hated for him to be seen this way because it is so different from his typical personality. And I also hated that I had to physically hold him back without being able to really explain it all to him. He sobbed the whole way through.

Today was different. I don't even know how it came up but we spent 15/20 minutes of our parent meeting this morning strategizing his next haircut. Could we take our own movie? Take him more often so he gets used to it? Etc. Etc. In my email this afternoon, I had a coupon for our regular spot and so I just decided to do it. We end therapy at 3:30 on Wednesdays so there's a little window of time. Plus, Drew had a sitter here so we could bring them along (to the consignment toy store next door) and I wouldn't have to worry about him while dealing with the awfulness of the haircut like I usually do.

My other worry was him falling asleep in the car since that is always an issue - particularly at that time of day. Sure enough, about 5 minutes before our arrival, he passed out. So, I took him first to the consignment shop. Even something "fun" like this is sometimes an issue for him because of its unfamiliarity. But he did great. He walked in holding my hand and explored the toys. He even labeled a few (Elmo, George, Thomas). We picked up a train, paid for it and left together. NO problem. I held my breath as we walked into the salon but he was fine. He willingly got in the chair, I gave him his coveted paci that I always bring for haircuts and he sat there and watched Cars. He never cried. He never really even flinched. A couple of times, he sort of chanted "ok, ok, ok" as if to say "enough of this" but he was SO good. It wasn't even especially quick. Then, when it was over and we offered a lollipop, he said "lollipop". I don't know what happened - I swear he listens to us in these meetings because when I bring up concerns, the behavior stops. Whatever it was, it made for one happy mama.

Here's the before and after - it's much cuter in person. And it's short so that buys us about 2 months before the next one.

I'm sorry but it's for your own good

This week should be titled "messing with B". We are seriously rocking his world in a major way. We have 2 new programs that, while good for him in the long run, feel pretty torturous.

First, we've upped the ante for his PECS (picture exchange communication system). He's really good at giving us the pictures but not so good at pairing them with a vocal, which is really the goal. So, we kept only the pictures of things that we know he can say, stashed the rest and unless he says it, he doesn't get it. Period. These are not pictures of, say brussel sprouts, these are his favorite things. Cookies. Thomas. TV. Ipad. Etc. Etc. Needless to say, it's making him pretty mad. We have successfully gotten him to make some vocal requests though. We're still in search of that magic key to unlock communicative language for him. As hard as it is, if we can make it powerful enough for him to talk for it, it will all be worth it. In the meantime, it is unbelievably hard to deny him and be responsible for the inevitable tears.

On top of this fun challenge, we introduced a "tolerance" program. As B gets older, he is getting more rigid and resistant to change (aren't we all?). So this one really aims to mess with him - shake things up, keep him guessing. There are a long list of things but basically, we're attempting to get him to try new things and to tolerate them. Simple things like sitting at a different spot at the dinner table to more difficult things like getting in a pool of water or wearing a hat or sunglasses. This too is not easy on him. I caused a huge meltdown yesterday simply by cutting his grilled cheese in different sized pieces. It has been eye opening though. I can easily see how, without any intervention, we could spend our lives walking on eggshells, afraid of what might set our child off.

On a positive note, we re-introduced motor imitation this week. This was something B really, really struggled with and we ultimately had to put on hold. He was great at imitating things that involved objects but he could not do anything with his own body like clapping, putting his hands up etc. In just one week, I have watched him successfully clap, wave, put his hands on his head, touch his face, touch his toes, pat his belly and several others. This is HUGE progress and a major stepping stone for his learning. I've said it before but imitation is KEY. I feel almost giddy watching him and remembering where he was just a few months ago.

Also on a positive note, we had a fun "normal" afternoon today. We had a cancellation in therapy after about noon. Since I already had a sitter here, I decided we should take the boys out for some fun. B rarely gets out in the community these days so I kind of feel like I need to jump at every opportunity. We took them to an indoor climbing/park type place and he did amazingly great. Sure, he ran around like a madman but he played in the bounce house with tons of other kids, transitioned easily between activities, took direction and played appropriately. Most importantly, he had a GREAT time. I'm worn out from it but encouraged and ready for the next adventure.

Bye Bye

B waived and said "bye bye" to one of our therapists today.  And the little stinker totally pulled a fast one over another. He is supposed to say "yogurt" when he wants it. It's not enough to give us a picture since we know he can say it. In typical fashion (when it comes to vocals), he has had to forego yogurt more often than not because he just refuses to say it.

So today, I went outside for about 2 minutes. The second I was out the door, he brought the yogurt picture to his therapist. She had forgotten that he was supposed to vocalize for it. I really think he was counting on that - as soon as mom was out of the room, he went for it. He's no dummy, that boy.

Playing independently

I've always thought B was pretty good at playing. He can keep himself busy and plays appropriately with most toys most of the time. I have learned however (through all of his many evaluations) that he does not stick with toys and does not complete them. He tends to jet from one thing to the next - checking them out and then moving on. One of the very first objectives in his therapy was what they called compliant play. He was being taught how to play when given the directive. He fought it pretty hard. In the beginning, it was literally just putting ONE piece in a puzzle. We worked up from there. Along the way, the objective was altered to focus on "independent" play and the goal wasn't so much about complying with the demand but on his ability to play for longer periods of time on his own. We've used a variety of different toys and he's now up to a target of about 2 minutes of sustained independent play.

So tonight, hubby and I were attempting to have a short adult conversation when he came home from work (a feat not easily accomplished by most parents). B was playing alone in the basement. I'm guessing he had been down there about 15 or 20 minutes when I went to check on him. To my surprised delight, here's what I found:

I then watched him take each of the remaining puzzles off the shelf one at a time, remove all of the pieces and complete the puzzle. Fifteen - maybe 20 puzzles in total: I'd call that some pretty impressive independent play skills!

Apparently we're on a first name basis

I haven't posted in a while. Big brother has been out of school and our routine has been rocked a little. Blogging was one of the things that got pushed aside.

We're cruising along here. B is still doing really well with all of his programs. I continue to be impressed by him. Whenever we've decided to try to correct a negative behavior, he seems to catch on really fast. For example, he had gotten really bad about pulling on me to get my help or attention. It was his primary way of getting his needs met but it reached a point where it was causing a problem. I could never sit down to eat or do much of anything without him trying to pull me away. If I didn't respond, he quickly escalated to crying and pushing. We put a plan into place to consciously block him and limit how often he could pull me around (for lack of a better term). There has been a remarkable change in a very short time period. We just finished a 4 day weekend without a single meal being interrupted. He catches on quick. We're now targeting a new habit that has developed where he is sucking on his hands & fingers. I am confident that we can nip this one pretty quickly too. And we're trying to curtail some of the aimless running he does at the end of the day by giving him a scheduled "free time" outside in the evening to run to his heart's content without anyone placing any demands on him.

He's also continuing to progress with all of his other programs. He is now matching letters and colors and learning lots of receptive labels for things. He can play independently through a sequence of 5 toys (we started with 1 step on 1 toy). He is pointing to pictures in books, using his PECS book to make requests, learning prepositions (on, next to, above, etc. etc.) and lots more. I think he has something like 15 programs at the moment.

Still, talking continues to be a challenge and frustration for me. He continues to progress at a slow and steady pace. The goal now is 24 words or phrases during each 3-hour session which he is meeting. We started at 1. Our attempts to get him to use language are still not clicking though. We recently put all of his Thomas trains in a clear bin. He used to say Thomas multiple times every day. All he has to do to get access to this huge treasure chest is say the word and yet he won't say it. I don't get it. We'll keep trying and exploring and hopefully that magical lightbulb will go on one of these days.

On the subject of talking, he just did do something very funny and awesome. I was holding him because I hadn't seen him much today and over my shoulder, he spotted and started pointing to our family picture. In perfectly clear words, he pointed and said mama, his brother's name and then his dad's first name. Not Daddy (though we've heard him say it many times) but his first name. He repeated it several times. Pretty funny. I'm pretty sure there is so much more awareness and knowledge in there - he just hasn't quite figured out how to get it out. I'm working on my patience in this area and reminding myself how much progress he is making overall and how hard he is working.

By George, I think he's got it!

On to a bigger cup. No problem. Rock Star.

Cup update

B is now drinking out of a tiny toy cup from Ikea. Within a day of giving up the sippy cup, he started drinking from one of these and now has not had a sippy in almost a week. Of course we will have a bit of an evolutionary process to get him drinking from bigger and different cups but we are done with the sippy and it was FAST and not even painless. I find myself underestimating the little guy all the time. Next up: Potty training.

In other news, his second tube fell out of his ear this morning. No more tubes. Only a little over a year after the surgery. Hmmm - maybe that was a giant waste of time.

Adventures in sippy cups

Don't ask me why but for some reason, I decided that B should move on from drinking out of a sippy cup. It goes along with the big boy bed, the push for self care independence and the general idea of making him a big kid like his peers. B drinks only from a specific type of cup and only water. When we took away the bottle at age 1, he never again drank milk despite being given an unbelievable myriad of cup options. To him, milk belonged in a bottle. And to him, water belongs in a sippy cup. This is where we see that he is in fact rigid and set in his ways/resistant to change even though he seemingly has a pretty easy-going nature.

So here we go. We started yesterday by allowing him to have this regular cup at meals but not at any other time. He was pretty unhappy about that. When presented with other options, he would push it away and cry and then try everything he could think of to get the sippy cup. After a trip to the park, I successfully got him to take a couple of sips from a cup. Small victory!  Today was more of the same except that I could not ever get him to take a drink. After a LOT of crying and failed attempts (and a definite negative impact on his therapy sessions), he brought me to the refrigerator and said clearly "water". He has never said this before and so he was immediately given his beloved sippy cup.

I was somewhat excited about this but our team leader was ecstatic. This is a big step for B. It tells us that he IS capable of talking to get what he wants... he just needs to be really highly motivated. So while it feels quite mean to deny him things (particularly water), this could be a huge step forward. He said water again tonight to request it. If he continues to make the verbal request, it may mean that it takes longer to transition him to a cup but this is okay. The cup is arbitrary progress. Using language to have his needs met is the whole key to communication.

We'll see what happens. B's will is so very strong. But my will for him is stronger.

Love for my big boy

It has been a while since I've posted anything about my firstborn. I really hope that this isn't a reflection of real life. We try very hard to lavish attention on our big boy since there is such a gigantic amount of focus on B around here. For now, B's needs are greater and more all consuming but I'm pretty sure big brother is actually benefiting from this experience as a whole. And fortunately, he seems no worse for the wear.

So here's a post for him.

I love who he is at age 4. I feel utterly loved and adored by him and this is not something I take for granted. He is quite the charmer. Here are some of the things he says to me regularly:
mommy, you look beautiful
I love what you are wearing
You're the best
I'm so proud of you
I love you SO much
You did such a great job at x,y,z

And there is no shortage of hugs, kisses and just general sweetness.

He is polite. He is articulate. He's funny. He has a huge heart.
He is sweet to his brother (some of the time).
He loves babies and animals and an audience. And, of course, his first love - cars.

I can take him anywhere. He's a great helper and can make the mundane errands fun.

Keep up the good work, kid. We are so very proud of you.

Love,
Mommy

Which kid?

Today was our 6 month review with our ABA provider. It has technically been 5 months since the last assessment and 8 months total of therapy. In December, we had a glowing review and were basically told that it's too soon to tell but that things were going as well as they could possibly go at that point. After 5 full months of living and breathing therapy and our external evaluation last week, I didn't expect quite as positive of a review today. I was honestly pretty nervous about what they were going to say.

One thing hasn't really changed. It's still too soon to tell. While B is clearly not on track in all measures (and in fact, quite far off the mark on some), he is excelling in others. I guess it's good that they use more than one method to analyze his progress and ultimate prognosis. On the other hand, it makes it a little tough to know how to feel about it all.

I'll start with the positives. He gained 17 new skills since the last interval (an increase of 80%). He's learning! There are 862 skills in total and he is up to um, 30 but he is accelerating rapidly. He has mastered over 1,300 of his objectives in his weekly programming. His success rate was 94%. He's learning a lot... he just had such a lot to learn! When viewing his videotape assessment with me, they were very encouraged by the difference in the quality of his vocals. He seems to be verging on the next phase of language - with much more intonation and communicative babble with occasional words thrown in vs. stimulatory jargon. He is also on track to master all 4 of his benchmark objectives for this interval of therapy.

His learning assessment standardized testing was also pretty positive. His developmental age in December was 6.4 months; today it was 14.1 (1.6 months of development for every month of therapy). This is really encouraging... if he can accelerate his rate of development, than he can eventually catch up to his peers. His IQ equivalent (since true IQ is impossible to measure at this point) shot up from 18 to 34. In Lovaas' original studies, the IQ needed to be above 30 to eventually reach recovery so he's in the range now. Even at this rate though, he would not be ready for Kindergarten until at least 2014.

Where it's not such a shining review is in his Early Learning Measurement Assessment. He has recently mastered 3 new skills on this test but there are 10 total and it is one of the predictors of best outcome. In the original study, kids were able to master this in 5 months of therapy or by 3.5 years of age. So, B missed that one. Nothing is clear-cut though. In his most recent assessment, he picked up 3 skills and they were ones that were not taught so he learned them incidentally. We'll keep an eye on this test in the next few months.  It focuses on things that are big weaknesses for B: motor and vocal imitation and expressive and receptive language. So it's not a huge surprise that he didn't ace it.

Also, where they have to choose where he is headed based on all of today's data, they selected significantly making progress rather than the options that say he is on track for best outcome. This is discouraging but we can't rule it out yet. I'm so, so hopeful that we'll be checking that best outcome box in the next review.

In summary, B is doing fantastic in therapy but we don't yet know if he's doing as well as he could be from an outcome standpoint. He's making significant progress but it's not as quickly as we'd like. We were shown 2 graphs of progression. Both were similar to where B is today but one jumped up in all areas and the other did not. We can't yet say for sure which of these kids B is going to be. We are sure hoping for the kid who "catches up". We have a kid with some serious potential here. The only thing we do know for sure is that we have a lot more of this ahead of us. A lot more time. A lot more sacrifice. A lot more intensity. And hopefully a lot more progress.

Worry

We've been watching a series on PBS this past week about Autism. Last night, while we listened to B cry in his room, it focused on adults with autism. What becomes of all these kids that we hear so much about? When they are "no longer cute and harmless". Let's just say it was more than a little depressing. They showed a 21 year old man who is about to lose support services now that he is an adult. He has no functional language... the closest thing his family has to conversations with him is a back-and-forth exchange of movie quotes. And the disheartening thing was that they showed this same guy at about the same age that B is now. If anything, he seemed to understand more than our little guy does. Of course we don't know what type of treatment he received or anything else about his level of impairment but nevertheless, it made us worry.

So then today, we went for his evaluation. And I wish I could say that it made us feel better. Unfortunately, it was a harsh dose of reality and now we are really worried. Scared. Petrified. Basically rendered speechless on the ride home.

We won't get their report for 4-6 weeks but I can give some highlights. From their assessment, B functions at about an 18-month old level and only 3 months for language. Less than half his age overall. Gulp. I hate to admit it, but 18 months does feel about right when I think about his real age relative to other kids.

B was in another room from us for all of the testing (which I didn't expect). We could hear him giggling and crying a couple of times for brief periods. While the psychologist worked with him, hubby and I were interviewed and filling out some standardized assessments. As we answered "no" more often than not, we were reminded of all the things he does not do like other kids. So many things.

He did remarkably well being in an unfamiliar place for an extended period of time. It did wear him out - he passed out cold in his stroller during the last half hour. Who can blame him? He is becoming somewhat of a pro at all this testing though.

And now to the "results". We really liked the psychologist overall.  She made a lot of good points like the fact that  it's difficult to truly test kids with autism because of their deficit in cognitive skills. And it's hard to know what they can do vs. what they will do. And she said that we have a great kid with a great demeanor and an infectious laugh. So she's also perceptive (ha ha).

But boy do we have our work cut out for us! His language just isn't clicking. Whereas we thought he had made huge strides in receptive language, she thought he was only able to understand via physical clues and intonation - not by listening to the words themselves. He did not respond to his name for her or to commands like "no" or "stop". He did surprise her by some of the things he could do like sorting, putting pennies in a jar, doing puzzles. Unfortunately, all of these are programs that he has been working on in ABA. So while it's great that he is retaining what he's learning, it's not great that he is having to be explicitly taught each of these things.

We were praised for getting him such intense help so early on and she definitely emphasized that he is still so young to know how he's going to develop. With regards to IQ or any additional diagnosis of mental retardation (renamed to a more politically correct intellectually deficient), it's impossible to assess until he's older. I think she said at least age 5. She also said that he is learning steadily rather than falling further behind.

Tough stuff to hear. Next week, we'll see how he measures up through the assessments and analysis of our ABA provider. But, as hubby pointed out, today's was the most objective opinion.

So we hold on. We keep going, knowing that we are doing all that we can. And that he is still our sweet boy who impresses everyone he meets with his happiness and demeanor. And we hope against hope that he turns that corner... that it just starts to click as it does roughly half the time with such intense therapy. And we worry...and worry. And then worry some more.

Happy Easter

We had a nice day off today. It was our first Sunday without a full day of therapy in quite some time. Good friends of ours graciously invited us for an Easter lunch. Since B spends SO much time in therapy, these outings are very rare and I am always nervous about how he'll do. He was SO excited to get to go and generally pretty over-the-top excited the whole time we were there. Both boys sat through the meal - I call that success. It is tough to see B around other "typical" kids though. He wants to be with them but really doesn't know how. So, he spends a lot of time around them and a lot of time doing his own thing entirely. It's not an easy thing for a parent to watch.

We also had a pretty tough ending to the day. Recently, B has started coming out of his room when we put him to bed (ahhh - the freedom of a big boy bed). Yesterday, we bought one of those door covers that makes it so he can't open the door. At first, he thought it was hilarious and then it quickly turned to a gut-wrenching cry. I didn't think we'd have to cry it out quite so late in the game but here we are again. Fortunately, it only lasted about 15-20 minutes and ended with him soundly sleeping in his bed (vs. passed out next to the door as I feared). Tough love. We had to do it or we'll be in this pattern of him getting up every night which isn't good for any of us. I just hate that I can't just explain to him that he has to stay in his room. I hope it only takes one night of this.

Tomorrow is a big day for us. April 20th marked the 1-year anniversary of B's diagnosis so it's time for an annual assessment. We have a diagnostic assessment/evaluation tomorrow from 1-4 with a new provider. I'm a little nervous and anxious about it. I never know what to expect. I'll try to update tomorrow with their findings.

Mommy, when?

"Mommy, when will B learn to talk? All on his own?"
Sometimes I really wish I had the answers.

You take the good, you take the bad

Good: 
Today: at 6 a.m., B pounced up our stairs and hopped in bed with us saying "show" amongst a LOT of other babble. I wish it had been later in the day, but it was super cute anyway. This too is progress. The old B would've kept himself busy on his own for at least a while before seeking us out.

I was gone for the 2nd of B's sessions this afternoon (the first one was with me so I welcomed a break). He has a receptive program where we show pictures of people (family & therapists) and when we say their name, he has to choose the right one. Apparently whenever my picture was present, he would pick it up and say Mama. It was distracting enough that they had leave me out of the options. I like that.

Bad:
I'm a little concerned that his bolting behavior may be back. He ran ahead of us when we picked big bro. up at school and did not stop when I called his name, yelled stop or any of the other things I yelled to him. He got ahead enough that he was out of my eye sight. Then in the parking lot, he freed his hand from mine and took off. Um, scary. This was a problem we had in parks before but once he started wanting to hold my hand, it went away. I hope today was a one-time event.