Food Glorious Food

Here is a looooong overdue update... have 3 months really gone by since I last posted??

Good things are happening in the food department. It's not a fast or easy process but I am so proud of how far B-man has come and so hopeful for where he's headed.

There was a time when just one bite of something he didn't like would cause him to reject the entire meal. A time when he went for an entire day without eating because we told him he had to have 1 bite of a chicken nugget first. His Mac & Cheese could only be a particular brand. His food had to be cut up and presented in the same way every time or he freaked out and/or refused to eat it.

I won't go into all of the details because it is tedious to say the least. Honestly, I burned out on it before B. ever seemed to. For over 3 months, we have been writing down every single thing he eats and strategically planning every single meal and snack. And he has gotten very little food for "free" without having to try something else first.

We're not quite to what I'd consider "healthy" eating but he is eating a HUGE variety by comparison. And most importantly, he is willing to try practically everything. One of our therapists has taken a particular interest in this program and tries new things every time he works with him... crazy things like tacos, spinach muffins, edamame, dried mango, sunflower seeds. And B. is trying them! Some (oddly enough the spinach muffin) have even become preferred foods. Today, he ate 1/2 of a peanut butter and jelly sandwich for lunch and spinach quiche for dinner. I can't express how extreme of a change this is!

We still have a ways to go but these are great strides and I feel like we'll get there. B LOVES to eat and this opens up a whole new world for him.

What other people think

Yesterday, I took the boys to see a movie. This sounds like such a simple, menial thing but when one of your kids has Autism, trust me, it's not. I didn't intend to go it alone. We were going to go as a foursome for a change. But then big brother said he didn't want to see it so it was going to be a date for just me and B which seemed manageable. I was looking at it as a test. We'd see how it went and leave if it wasn't working. After all, it'd been over a year and a half since he'd been to a theater. When we did go to the theater, almost without exception, he'd fall asleep part way through. It might be some sort of response to all of the stimuli. He also used to fall asleep at "school" when he was little. But now he is much too big so there would be no lap sleeping. And also, B. has been totally conditioned to watching just parts of movies. They use them as reinforcement in therapy so he never gets to sit all the way through. He works for a few minutes, watches a few minutes and so on. You can see how this might backfire.

So, as we were packing up to go, big brother had a change of heart and suddenly really, really wanted to see this movie. And Daddy was no longer available to go. I had a big talk with him and told him that we'd have to leave if it didn't work for B. and not to be upset etc. etc. To be honest, I really was trying to talk him out of it. I was pretty confident that a) we would not make it through the whole movie and b) his brother would embarrass the you-know-what out of him and c) I wasn't sure I could handle both of them.

But he wanted to go and it didn't seem fair not to take him so off we went. Well first, I had to pack an entire backpack of "supplies":
-popcorn containers because I knew B. wouldn't be able to share from the same bag and likely wouldn't touch the popcorn at all if it wasn't in his familiar popcorn container
-cups for water because B. does not know how to drink from a water bottle or straw
-a chewie that I HOPED would keep him quiet and busy for at least a little while
-sweatshirts for all in case it was chilly (which came in handy to prop up behind B's back)
-2 stuffed animals for him to play with
-3 packages of fruit snacks that are usually reserved for bribery (ahem - rewards)
-a last resort bag of toys that I thought he might play with if he got bored and ready to leave before the end of the movie

And the backpack was so I could be hands free to keep a firm grasp on each kid's hand. Of course, I didn't factor in the addition of popcorn and water which required both of my hands and a drag along effort on big brother's part.

The parking lot was packed when we got there. I could feel my anxiety rising. Fortunately, it was just the theater as a whole that was busy and our movie wasn't that bad.

I purposefully got us there about 2 minutes before start time so we wouldn't have lost precious attending time from B. before the movie even started. I didn't want to walk in the dark though so it had to be earlier than start time. And still it was FIFTEEN minutes before the actual movie started. I don't get this - kids do not need to see 15 minutes worth of commercials and previews and short films before the actual film you are there to see!

If I could have fed him popcorn for the entire time, we'd have been golden. He munched through 6 refills of his popcorn (probably half a medium sized bag) and was *almost* just like everyone else. The legroom was roomy enough that he could kick his feet and not hit the seat in front of him. So we were good. BUT... there was a family directly in front of us and behind us. As B's noises escalated and when he started quoting a line from the movie Bolt of all things (Bolt, really?), I decided we needed to be considerate and move. I had been eyeing the end of the row because it was completely empty all the way down and even part of the row above it. I whispered to my big kid that we needed to move down. This was a huge gamble. Moving might have made B. think it was time to leave or upset him. And it definitely could have upset big brother. But we did it and it was a saving grace.

From then on, when B. got louder and louder with uncontrollable bursts of laughing, singing, jumping, rocking etc. etc., I felt like we were far enough away from everyone and that the movie was loud enough that he wasn't disrupting anyone else's experience. And after all, it IS a kids movie so you have to expect a bit of noise.

I chose this movie (Monsters University) because B. LOVES Monsters, Inc. He can probably quote or act out the entire movie. Loves the characters, loves the music, loves it! So I figured that might buy me a little bit of his attention. And it might have... tough to say. He did well overall. We worked through all 3 packages of fruit snacks and he asked for more and searched my bag a couple of times. We used the chewie, we used the stuffed animals, he did sit on my lap for about a half an hour (I couldn't see but that's beside the point) and he stood for a little bit too. BUT he didn't try to leave. He was happy to be there. He didn't ruin it for his brother. I think he had fun.

It was a LONG movie for me. I think it was cute but honestly I was so focused on getting through it that I didn't take the whole thing in.

This is a very long winded way of describing what it takes to do the simplest things with a child like B. In a couple of weeks, I am FLYING with them ALONE so you can imagine the planning and preparation THAT will require. I'm officially insane.

It's sad that it takes this much effort to do things like other people. But aside from common courtesy (it really wouldn't have been fair to let B. make noise over the movie directly in another family's ear the whole time), I really was more focused on the experience for B. and his brother. I am learning to care a lot less what other people think. We have just as much right to be there and to get to enjoy the movie and if that enjoyment looks different for B., then that should be okay. He is teaching me that. It's a great lesson for both me and his big brother. I think parts of my life could have been a lot easier if I had learned sooner not to care about what other people thought. But I also want to be a people pleaser and that doesn't compute. I'm not there yet - I have a LOOOOONG way to go but I'm working on it. And B's going to give me lots and lots of practice.

Time to Testify

Tomorrow night, hubby and I get to go speak to the chamber of commerce and beg for funding to cover B's therapy. The insurance mandate passed (woo hoo!) but we are part of a loophole and our coverage is still in jeopardy. Can I tell you how much I do not want to do this? I'd rather do just about anything than speak in any type of a public setting. It's just too important not to. Here's my spiel:

My name is (me) and this is my husband. Our son B. was diagnosed with Autism when he was just 2 years old.

We have 2 boys who are 15 months apart. B is our youngest. He was and is the happiest kid you’ll ever meet. His laugh is infectious. But he is not like other kids. At the time of his diagnosis, we were told that he functioned at the level of a 3-6 month old – a full 2 years behind in development. He constantly jabbered but he had no functional language. Not only was he unable to express himself, but he seemed to have no understanding of anything we said to him. In the community, he would bolt with no regard for his safety. One of our most terrifying experiences was when he wandered off at an amusement park and was lost for what was only a few minutes but seemed like an eternity. We were very fortunate to find him nearby as he would not have known that he was lost, could not have asked for help and wouldn’t even respond to his name if called. It was terrifying to have such a vulnerable child and we feared for his future and the future of our family.

We were told by every medical professional we met that we needed to get him early intervention therapy as soon as possible and that it was the only proven therapy to address his needs.

And then we were told that this therapy was not covered by insurance, was very expensive and that we would have to jump through hoops to get it. In as expedited a manner as possible, we were able to get started in intensive ABA therapy. It took 8 months. And in that excruciating waiting period, we tried our only other alternative for treatment which was Special Ed services through the school district where his development stalled at best.

We are now in our third year of ABA and B is not the same kid.  Today, he is fully potty trained and able to perform the same self-care rituals as his older brother. His receptive language has grown leaps and bounds and he can understand and follow commands. His speech is still significantly delayed but he is able to communicate his wants and needs with simple requests and has shown tremendous potential for reading and typing. He has already exceeded his brother in learning sight words and we have great hope for how this can help him find his voice in the future.

We initially used TEFRA (Medical Aid) to help pay for this essential therapy. But when my husband became self-employed, our parental fee TRIPLED to a monthly payment that exceeded our mortgage. His income is variable and my full-time job is taking care of our kids so this is not a sustainable price for our family. I’m not sure that it’s attainable for any family.  We looked to MCHA and for 6 months, we paid the steep TEFRA fee and the MCHA premium AND the monthly premium for our private insurance plan for the other members of our family. After the 6-month waiting period, we were able to drop our TEFRA coverage but we still pay for MCHA and very pricey private insurance.

You can’t put a cost on this kind of benefit. Without it, our son’s future and our family’s future is grim. But we can only sacrifice so much and there comes a point when the money is simply not available. Without MCHA, we don’t have another viable option.

Unfortunately, the Affordable Care Act seemingly makes this coverage unnecessary since our child can no longer be denied insurance because of his diagnosis. We are told that MCHA is going away because we don’t need it anymore. This is simply not true. Insurance companies continue to deny coverage of the ABA treatment we depend on and at this point, the ACA does not cover intensive ABA. Therefore MCHA is still necessary until ObamaCare includes behavioral health treatment.   If MCHA goes away before families like us have other viable insurance, the consequences are very, very high. Without it, the state will have to use Medicaid to pay for this treatment which will cost taxpayers much more and will be unaffordable for many who desperately need it.

But it’s more than money – it’s the future for these kids and their families. And it’s even bigger than that. The state as a whole will be greatly impacted by every child who is denied the treatment that could enable them to become a contributing member of our community rather than a drain on our taxpaying dollars.

Please confirm MCHA’s commitment to cover ABA and other autism treatments until they are included in Minnesota’s ACA essential health benefits set.  The stakes are simply too high. Thank you for your time and attention.

Man V. Food - take 2

We've started up a food tolerance program for B again. The other one fizzled out because he started refusing to try anything and then he had a mystery illness for 3 weeks and we didn't want to mess with him.

But here we go again. We're a week in and I don't want to jinx it but it's going well so far. It's hard core - all or nothing. Here's how it goes:

If B wants to eat ANYTHING, he has to try a bite of something else first (some things he's had before but doesn't eat and some brand new stuff)

We don't offer him food on any type of meal schedule. He has to indicate that he's hungry so we know he's really motivated. Today he didn't eat anything until 11:30 a.m.

He has 5 minutes to eat the bite in front of him. If he doesn't do it, we take away the food he requested. He can have additional chances with new foods to try if he "asks" for the food again.

Last time, we just tried to reserve the really, really preferred things like cookies, cupcakes etc. to get him try something new. But he's a smart kid. He figured out that he'd still get the meals he liked (pizza anyone?) so he could just hold out and refuse whatever we offered.

So now it's all or nothing.  There have been tears. Defiance. Hunger. It sometimes took 3 tries before he ever got the meal he wanted (yes, reheated 3 times at that point). And on Friday, he ate lunch and then never got another thing to eat until late the next morning.

As a parent, it is excruciating to deny your child something as fundamental as food. It takes "doing it for your own good" to a whole other level.

But this is what it takes for B. All or nothing. No easy way out. His will is so very strong. And he won't just do this on his own or outgrow his pickiness the way some (most) kids do. We were on a slippery slope and it wasn't much of a stretch to imagine a day where he ate only 1 or 2 foods. And when it comes down to it, we'd rather have a few days (weeks, months?) of the tough stuff than a lifetime of terrible nutrition.

I'm happy to report that he has been successful with more than 20 attempts - 100% success since saturday. Today, he tried dried pineapple and a banana chip. If we could introduce fruit and vegetables into his diet, it'd be a huge win. We have a LOOOOONG way to go. A long, painstaking journey for both us and the little man.

So there you have it. If I look a little more frazzled than normal, you know why. It's a fun project to tackle now that school is out and we're on "vacation". How's your summer?

When giving your all still isn't enough

6-month review today. Otherwise known as sucker-punch day. We are almost 3 years into this therapy, which is hard to believe. We had a couple of good... GREAT reviews early on. We thought we were tracking toward best outcome where B would actually "recover" and lose his Autism diagnosis. We found hope. And then we didn't. And today we got another tough pill to swallow.

They started with the positive. B has made remarkable strides in his therapy. He is learning and progressing. Slowly but surely. He can learn. But he is having to be taught every little minute thing. And everything is having to be broken down further. He doesn't generalize things and he doesn't learn a lot on his own.

Then we looked at his overall scores relative to his peers. Less than a month of development for each month of therapy for the last year. He is at a developmental level of a 27 month old and he is 5 and a half. 40 plus hours of therapy every week. 4-5 hours of parent training every week. 2-3 hours of Mom/Brady therapy sessions. 2 weekly planning/progress meetings. 6-8 people in our home ALL. THE. TIME. Thousands AND thousands of dollars. Absolute and total devotion to this therapy and our boy. Sacrifices. Stress. How can this be?

We were told that we are likely looking at about another year and a half of this intense ABA therapy and then we need to figure out what's next. And during this next year and a half, we should switch our focus... no longer strive for "recovery" but for what will best improve his and our quality of life.

How do we do this? How do we stop hoping and dreaming for our little boy's future? How do we accept that he may never live independently? That he may never have friends? That he may never even functionally communicate?

Rhetorical questions. I wish I knew.

Not that pumped about Pump It Up

After unfortunately having to cancel a weekend trip to visit family, we were left with some therapy-free time. I thought it'd be a nice "treat" to take the boys to the drop-in playtime at Pump It Up this afternoon. This is a place we go semi-regularly. I'd say we've been at least a dozen or more times. And B LOVES it! Any place that involves bouncing is paradise for him. However, it has always been a place that I felt more comfortable having a 1:1 ratio since the boys tend to go in different directions and it's usually loud and busy. Our PCA used to take B. sometimes and he even went during therapy sessions a couple of times.

The last time I went (probably a month or 2 ago), it was glorious. I decided to brave it since a second set of hands is a rare thing anymore. And to my surprise, it could not have gone better. The boys had a blast and B shocked and impressed me by doing all of the obstacle courses on his own and seeming so comfortable there. For once, I didn't have to be completely on guard the whole time and I think I may have even sat down for a bit.

Today didn't go as swimmingly. It was pretty empty when we got there and the boys were super excited - B. practically sprinted in the door. But right off the bat, B went to the obstacle course and sort of got stuck once he got to the wall you climb to go down a big slide. You are not supposed to go the other way out of the course and it's pretty tough to go in after them. Big brother tried. He went in and tried to coax B. through it but he just couldn't. B. seemed like he was trying to psych himself up because he'd start back and then go to the wall again as if he was going to give it a shot. Ultimately, I lifted him up over the side and we moved on. For a few blissful minutes, the boys jumped happily in the bouncy house.

Then came the slide.

I tried to be proactive. As B. started heading that way, I went up to the woman working there and told her that he has Autism and isn't really able to understand how to use the mats to go down the slide so is it okay if he just goes down without one? This is something he has done confidently probably about a hundred times. In what I'm sure was not as intentionally condescending as it sounded, she said she'd have to go talk to the owner. And when she came back (after B. snuck up and down the slide a time or two), she said "I'm so sorry but it's corporate policy and it's a safety issue and he has to use a mat". So I told her I would do the best I could but the reason I said anything to her in the first place was so that she'd be aware when he ran up the slide and didn't seem to listen to instruction. From that point on, I was on high guard. Since I really couldn't do anything to get him to do the slide the "right" way, I just tried everything in my power to keep him away from the slide. All the while attempting to pay attention to my sweet 6 year old who wanted and needed me to see what he was doing too.  The best thing I could come up with was to take off my shoes and jump alongside them so at least I could keep them both in one place. This worked for a few minutes. Then B. headed to the slide and since the helpful employee told me that I was welcome to go on the equipment with him, I decided to try that approach. In doing so, I had to also promise my other son that I would take one ride with him too. I grabbed a mat and went to the top. But when we got there, B. took off down the slide before I had time to put him on my lap. And then he tried to figure out how to get back UP the slide to me. So for what felt like an eternity, I sat at the top of the slide yelling to him and trying to get him to understand that he had to move out of the way before I could come down. Then I had the issue of the promised ride with my older son. I try extremely hard not to break promises to him. So we did it quickly and I held my breath hoping that B. wouldn't do anything in the couple of seconds he was out of my sight. Of course, he did go into the next room when the whistle went off and my heart sank while we ran after him.

Aside from B. getting out of my sight (which is always terrifying), I was actually relieved when we got the whistle cue to switch to the other room. Oh but first the ever-so-helpful employee singled me out to see if my son was going to be bothered by the sound of a whistle. Yes, I know - this is actually a very considerate and nice gesture but it just made me feel even more different in a place where we were trying to fit in with everyone else.

Once everyone was safely in the next room, I was paying attention to big brother for a minute and B. took off on the big slide in that room. Helpful employee #1 came over to me and said "I'm sorry - I'm not worried about the mat but he isn't holding on to the ropes when he goes up and it's really a safety issue." She didn't know if maybe there was a way that "I could communicate to him to hold on".Yes, yes of course there is. I have a special language that only I speak and I CAN get him to follow all of the rules - I just choose not to. If only she knew how much that comment hurt me. Just how painful it was to me at that moment that I simply could not make my own child understand. I told her I was doing the best that I could and I would try to keep him away or to go with him. I asked her WHY they are so insistent on using the mats when they only make kids go faster which seems less safe in my humble opinion. And she claimed it ensures a straighter, safer ride. Whatever. She mentioned that they do "special nights" for kids on the spectrum and seemed flabbergasted when I said that I thought that environment would actually be harder on both of my kids. The helpful suggestion also sounded very much like we weren't that welcome to be there this afternoon.  And I get it. I know it must be hard for them to have to enforce the rules to the other kids when somebody else is sneaking past them and not having to play by the same rules. I was just in a really tough spot. I do keep in mind the needs of the other kids. We went at a time that wasn't busy. We practiced this dozens of times before I ever attempted it on my own and I wasn't letting B. do anything that I knew he wouldn't be able to do. I knew that he would not push anyone and wouldn't go down at the same time as anyone else. And I knew that he was absolutely capable of going up the steps holding on to the sides and not the rope. But let me tell you, B. is FAST, STRONG and DETERMINED. I went up with him several times and most of the time, it backfired. Boy did I try. At one point, there was a tiny bit of a line and I had to literally pull him out of it and hold him down. All the poor boy wanted to do was go down that slide.

Helpful employee #2 came over to give me a pep talk at one point. After asking me if I was a "teacher" and seeming surprised that I was the mom, he told me all about his friend's kid who had SIDS and then it turned into autism. Which is so stupid on so many levels. Aside from the fact that SIDS actually means infant DEATH syndrome so can't become anything else, just the idea that autism can be something contracted like a disease is idiotic.

After trying to coax B. to do the obstacle courses and avoid the slide, it was time to call it a day. I was disappointed that he wouldn't do the courses he had done so successfully before. And I was sore and beaten down. I pulled my neck and wrist with my acrobatic attempts to reign in the crazy slide activities. I'm apparently too old for this.

One final blow as we were leaving: helpful employee #1 followed us out to the lobby and said "I just want to say thank you for all your help and for coming today". Again, I'm sure she was trying to be nice but I felt deflated. I felt different. I felt pitied. And I felt like we didn't belong there.

It's a double-edged sword, I know. I have a hard time when people make special accommodations for B. because I want so desperately for him to have some experiences like other kids. It's painful to me when people treat him or us with pity. And yet it's also painful when people unknowingly try to carry on a conversation that I know he will not be able to participate in. You can't win. I recognize this. So please don't be afraid to talk to him or me. I know people do the best they can. It's just painful. I left with a sore body and tears in my eyes but trying to talk to my big kid and make sure that he had fun. It's not easy on him either.  Still, as bad as I felt after today, I thought about my boy. How much worse it must be for him. Literally NO ONE understands him. EVER. Even his own parents who love him more than we thought humanly possible can not figure out what he needs most of the time. He must feel like I did today times about a million. My sweet, sweet boy. Why does it have to be so hard?

Boy vs. food

As much as I try to let it go, food is a huge stressor with B. His diet is atrocious. I try not to worry too much since he is healthy and growing and since we have so many other things to focus on but it still weighs on me. I have a (likely irrational) fear that he will someday only eat one or two foods. We do seem to be headed that direction. We've been on a downward slope lately. His list of 5 or so preferred (i.e. only) meals have dwindled to 2. Cheese pizza and cheese quesadillas. Take your pic. That's it. That's all he'll eat for lunch and dinner. He also has a fairly long snack repertoire of processed carbs and we all know what a wealth of nutrition those offer. And it's not just that he won't try NEW foods or healthy foods. He is rejecting LOTS of things that he used to love - pancakes, hot dogs, nuggets, certain cheese sticks, mac n cheese, apple cinnamon muffins! And things that he used to at least tolerate are totally off the table. It's beyond frustrating. It may be a phase and he may get back to where he was on his own but I'm thinking that's unlikely. We worked so hard and made such progress that it kills me to see him going backwards.

And since this has been one of my top sticking points for the last 3 years and since he is totally rocking his therapy programs, we're going to embark on a challenge. One that frankly seems insurmountable... FOOD. Eating will be a huge focus around here soon. In order to get any of what he wants to eat, he's going to have to take a bite of something else. We'll start small and work our way up. Not my idea of fun. I think I'd prefer to check myself into a hotel while they get it all figured out. And then come home and enjoy the rewards. Where do I find that kind of therapy program? Any takers?

Today was the first test. I pulled out the big guns. We started with a trip to the store where I let him get a giant donut. Then, I gave him his choice for lunch and he chose pizza. I made one chicken nugget (something he used to eat) and cut it into tiny pieces (about the size of an M&M). I put one teeny bite on a plate in front of him and a giant plate with his entire favorite pizza AND a bakery bag with his donut behind that. "first eat the nugget and then you get ALL of this.". We were expecting a day full of crying and tantruming. And well, that was his initial reaction. But it was much shorter lived than expected. We were counting on 30+ minutes and it was under 5. His next move was to clear the plate with the nugget. Nice try. Then he picked up the nugget and tried to feed it to the therapist. Smart kid. Within the first 5 minutes, he actually picked it up and put it to his mouth. SO. CLOSE. But no go. He put it IN his mouth later but spit it out before we could reward him. We kept this up every half hour for the rest of the afternoon and then threw away the pizza, gave big brother the donut (while B was out of the room) and made grilled cheese for dinner. Oh wait - there are THREE foods he eats - 3 variations of cheese & bread, mind you, but 3 is better than 2.  My parents arrive tomorrow for a visit so we'll hold off on the torture... ahem food program... for a week. And after that we go again. Round 1: B wins. This is one strong-willed kid. I personally would have eaten pretty much anything you put in front of me if it meant I could eat pizza and a donut. But that's just me.

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.