Mr. Senator, Meet B.

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

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

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

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

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

You win some, you lose some

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

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

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

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

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

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

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

Just like everyone else

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

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

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

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

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

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

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

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

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

Here are some pics. I took waaaay too many!

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.