Clean bill of health

I finally got around to taking B in for his 5-year well visit at the dr. Somehow it fell off my radar - I'm usually really on top of these things. Maybe it was because I knew there'd be shots - lots of shots - and I wasn't in a hurry for either of us to experience that. Maybe I am just not as on top of things as I should be.

Last Friday was the day - almost 3 months after his 5th bday (not too bad, right?). I took along our senior therapist for help and support. Visits to doctors offices can be difficult. There have been times where he freaked out so much that we couldn't even get his measurements. Other times they've called in "back-up" because he is one strong little boy. But sometimes, it has been a walk in the park. Based on these experiences, I take along reinforcements because it makes me more confident going in.

I'm happy to say that this was one of the walk in the park times. B. did completely amazing. The more I worry about something, the less of an issue it usually ends up being. He had no trouble with the whole visit. He waited in the room, stood on the scale, against the wall for measurement, and waited some more. He even did well with the blood pressure cuff and the dr. checking his heart, ears etc. He was incredibly loud in the lobby and while the dr. was trying to talk to us but they were happy noises and we haven't figured out how to tone them down. With all of the screaming kids in there, I don't think he really even drew any attention.

And then came the shots. FIVE shots for the 5th bday. That truly is an insane number in one day but it is just easier to do it all at once. B was hesitant to lay down on the table but I held on tight and our therapist held another hand and the amazingly talented nurse did 5 shots in what was practically the blink of an eye. Man, she was fast! B. got a couple of tears in his eyes that literally did not even make it down his face, hopped up and that was it. That was IT! Amazing! This is one of those rare times where autism can actually be a blessing. No need for explanations, no advanced worrying, no melodrama. A million times easier than with lots of kiddos (including my own).

Usually they check hearing and vision but there really is no way he'd be able to do either of those tests. We've had him looked at by an eye dr. and he went through a bunch of hearing tests early on when we thought that was a cause of his language delay. So I think we're okay there. At least I hope so. The poor kid doesn't need to have to deal with anything else.

Our dr. is definitely not an expert in Autism. She was adamant 3 years ago that B. absolutely did not meet the criteria and led us down another path (ear tubes for suspected hearing loss). For the basics, she's a good dr. and both boys have been seeing her since we moved here 6 years ago. But she really doesn't get it. I nod and smile at her helpful tips like "just keep offering the vegetables. One day he will decide to pick up and try that green bean." I find this theory very suspect for typical kids but with B., there is not a chance in Hell that this will ever happen. And we always talk about his diet and how poor it is. More helpful suggestions - "make sure he has enough vitamin D and B6 and maybe give him a supplement for sleeping every night." She has NO idea what a miracle it is that B. takes a multi-vitamin in the first place (on good days) or that if I attempted to give him something different, how VERY likely it'd be that he would never touch another vitamin again. Or potentially stop eating other things I give him. He loses trust in me very easily. I've tried all the methods to get him to try new foods. He once stopped eating his favorite Mac & Cheese for FOUR months. He wins. We also talked a while about his sleep habits and how they could be improved.  And how his therapy is going. She asked me and then asked our therapist for her perspective which I found very odd but whatever. I mean, did she think my therapist would say something different than I did with me standing right there?

Those were the main topics. I take it all with a grain of salt. I realize that B. has an atrocious diet and that it's not a good thing that he is awake for sometimes 2 hours after going to bed and sometimes 2-3 hours in the middle of the night. It's not ideal but we have a lot bigger fish to fry. It's funny (ironic - not haha) how many trivial things we worry about with our kids. And how much more than that we take for granted. I'm guilty of it too. B. reminds me of the big picture. Maybe I should find a specialist though. The "normal development 5 years" checklist that came home with me is a little bit of a blow that I could have done without.

And as proof that a child really can thrive on an all cheese, all-carb/processed- food diet, here are his stats: His brother's at age 5 are in parentheses for comparison:

weight: 46 lbs - 75 percentile     (38 lbs - 25-50 percentile)
Height: 45 7/8 - 90 percentile    (41 1/2 - 25-50 percentile)
BMI = 15.4 - 50%... perfect       (15.5 - 50%)

Dr. visit - check. Done for another year. And no more shots until age 11! Side note - two days later, B. came down with his FOURTH bout with the stomach flu. I blame the dr's office. The worst place to take a healthy kid is to the Dr.

Love

Our bedtime routine goes like this: label pictures in a couple of books, climb in bed and say "good night" and then "I love you". Sometimes we have to repeat these phrases before B reciprocates. Sometimes we repeat them several times until he finally cooperates. The other night, for the first time, as soon as Daddy said "goodnight", B said "goodnight - I love you" (which sounds more like "I wuh hoo"). He did it again when I said goodnight. Now of course we know this is a memorized, programmed response but it felt good nonetheless. It was exciting that he initiated it. And then a couple of days later when his occupational therapist said "bye, bye", and he fired back with "bye. I love you", the significance was quickly diminished.

That same day coming home from O.T., big brother professed his love for a girl in his class. His emotions were so strong as he poured his heart out. He told me all of the reasons why he likes her, how he wants to marry her, and how he wants to figure out how to be her friend. My heart melted.

I try not to compare my kids. They couldn't be more different. But they are both boys - a mere 15 months apart so it's tough not to. A lot of times this is a really good thing and it's helpful to know what is age appropriate and what B should strive for. At other times, it serves as a pretty painful reminder of all the things B does not... and may never... do. When it comes to emotions, this is especially tough. B's version of love is so very, very different. I know that he does love us, in his way but it is very hard to have the same kind of relationship without true communication. It's SO much easier with my big boy who tells me daily how much he loves me and shows me in so many ways. And I can't help but wonder if he ever will know love in the way that I hope my older son will. Or will he even care or know what he's missing. I try not to dwell on it and focus on the day to day because honestly it makes me sad on a level that I'm not quite ready for.

Sick?

B. has been under the weather a lot recently. Boy do I hate it. I hate when my kids are sick. And what I hate more is the uncertainty and doubt about whether they truly are sick enough to miss school or therapy. I always tend to think they are faking it or making it out to be worse than it is. I don't know why - I don't particularly remember trying to fake sick as a kid. But for some reason, with my older son, I am always second guessing. Does he just want to stay home? Do I make it too easy on him when he says he's sick? I just don't want it to become a habit for him to say he's sick when he wants to get out of something. So, recently, he (6-year old big brother) said he had a tummy ache and couldn't go to school. After MUCH deliberating and negotiating, I got him to agree to "try" going to kindergarten and that I'd come get him immediately if he was really sick. So, we drove to school and started walking in. He broke down in tears and thanked me profusely when I agreed to bring him home. Not 2 hours later, he started the first episode of stomach flu puking. Bad call, Mom. I should have just let him stay home from the beginning.

With B, it's even harder. I can never tell if he is sick or if he just doesn't want to work. Unlike his big brother, he doesn't try to "milk" it. He has worked through lots of different sicknesses like a trooper. Which honestly is far worse than if he were faking it. He can't tell me and I really just never know if he's truly sick. I'm always hesitant to cancel therapy and it often results in a lot of guilt after we make a poor little sick dude work through it all day. One of my biggest mom guilt issues is when I took him on an airplane TWICE with a WEEK in between while the poor kid had a double ear infection. He had just gotten tubes in - I didn't think ear infections were possible -and I just couldn't figure out why he was such a mess.

Last week, B had a rough day. He was crying and screaming a LOT. But in between, he was seemingly so much better than fine - running around and laughing like a maniac. So we kept going. But those down times were really down. He cried in a way we hadn't heard before. The worst part was after he went to bed. Hubby and I heard him cry out in his room (a first) and both of us ran in thinking he had hurt himself. He just lay there crying and didn't want either of us to touch him. We brought him out to the couch and he ended up falling asleep on my lap. It was heartbreaking. What if something was really wrong? Did we need to take him to the dr.? The emergency room? I have never been more desperate for him to be able to talk.

Considering the very limited language he has, B actually does a pretty good job of getting his point across. Except when it comes to things like this. And this is the hard stuff. It kills me knowing how frustrating it must be for him to be so miserable and so incapable of telling us. We do what we can. And I take comfort in his sweet little voice saying "you're ok" over and over as he snuggles in. He may not be able to tell me what's wrong but he does find a way to let me comfort him as much as I can.

Carefree

At 3:00 this morning, I heard one of the kids in the monitor. Seems like we should be past baby monitors at age 5 and 6 but their rooms are a floor below us and I'm paranoid. I get a lot less sleep because of them. It wasn't a frantic "MOM" so I knew it was B. He has never, in 5 years, called out for me - not even when he's sick or hurt. I wonder if he ever will. What I heard instead was laughter - deep, belly laughter. I didn't listen for long but I know from experience that it would go on for as long as an hour or two. B was having a little party in there. In his bed. Completely by himself. Blissfully happy. This is B in a nutshell. This is what he does when he is alone in his head.

This is one of the differences between B and the rest of us. It's one that actually makes me a little envious. When I wake up in the middle of the night - it's not laughter that keeps me awake. It's the endless list of worries and anxieties and stress. Even at the young age of 6, my older son has his fair share of worries, anxieties and fears. And as adults, we spend far too much of our time on them. Not B. When left to his own devices, he doesn't have a care in the world. He's honestly the happiest kid you'll ever meet. I've been told this on numerous occasions by a variety of people... most recently by the guy checking our bags at the airport. He literally cracks himself up. And oh that giggle. I've said it before but it is the most infectious thing you'll ever hear. If there is an upside to Autism, this is it. At least in our case. Autism can take many forms - aggression, self injurious behavior, isolation, depression etc. I am thankful everyday that for us it manifests itself in this way. One blissfully happy kid with an amazing smile, an amazing laugh and immeasurable joy.

Reading?

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

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

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

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

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

Something's clicking

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

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

Back at it

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

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

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

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

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

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

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