Overload

April vacation was a couple weeks ago, and thanks to a surprise bonus from my husband's work, we were able to actually go away.

Now, both kids love the movie, Night at the Museum, and have been asking to go to NYC to see the actual museum for a while. Unfortunately, NYC is not exactly cheap, so when the opportunity arose to finally take them, we jumped on it. 

I went into this vacation knowing we were going to the most over stimulating place on the planet. I looked online ahead of time, and planned our week. I also chose a hotel that wouldn't be far from any one place, in case we needed to make a quick escape.

Of course, my idea of "close", and the kid's idea of "close", are two very different things.

We took a bus from Cambridge (a city next to Boston), on Monday.

Patriot's Day.

Yep, Marathon Monday. 

It took us a little over 4 hrs to get to the city, and once we checked into our hotel, we headed to Times Square. It thankfully wasn't too busy, and we made sure to hit up all the kid friendly places: the M&M Store, Disney, Toys R Us...

We were actually standing in line for the Ferris Wheel at TRU, when my phone started going crazy with "breaking news" alerts.

Sigh.

I won't speak on the tragedy that happened. We all know about it, and I have nothing to add. But, needless to say, we left Times Square after our ride, because being in such a touristy area didn't feel real safe. Where we went was definitely affected by what happened at home, but we still made it a memorable vacation for the kids, who were the whole reason we came.

After leaving Times Square, we headed back to the hotel and relaxed a bit, before getting the most expensive TGIFridays dinner known to man.

Yep, TGIFridays, because we needed to make sure wherever we ate had food for picky 1 and 2.

But, seriously, even knowing we were in Manhattan, we could have died when we saw the grossly inflated prices. Welcome to NYC! Also, Ben didn't end up eating his food. His like $50 kids meal (that might be slightly exaggerated). So, being the frugal person he is, my husband took it home, and ate it for breakfast the next morning.

We're not fancy. 

On Tuesday we headed to the Museum of Natural History...which was not one of the "close" places to our hotel. K let us know just how not close it was the whole walk there, as Ben took it upon himself to try and hail a taxi. Thankfully, he is still small enough to ride on daddy's shoulders. 

Unfortunately, K had to hoof it the whole way.

(Autism Awareness, people! We spread a lot of it in NYC!)

The museum was amazing, and huge. We split up, me with K, my husband with B, and took the kids to the exhibits they most wanted to see (which, of course, were not remotely the same). 

It was amazing, but overwhelming. By the time we left, K was d-o-n-e DONE. Thankfully, we found a little playground across the street, and the kids were able to play in the sand, and spin on a tire swing for a while, which helped bring them  back to the green zone. 

After the playground, we took the subway back to the hotel, which the kids greatly appreciated. Kai and I ordered up some (cheap, yet yummy) sushi, and the kids ate their leftovers from lunch. (Did I mention I had a tuna sandwhich at the museum, and it was $9.50? So, yeah, we weren't tossing any of the kid's leftovers from lunch.) 

Wednesday was the day K had been waiting for. A trip to the American Girl store. Not wanting to force the boys to go, they took off to tour some aircraft carrier museum. 

B had a great time looking at the ship, and the airplanes displayed on the ship, and he even got to tour a submarine. K and I spent the day getting her doll's hair done, shopping, and having "tea".  Thankfully, K has to be practically forced to buy anything, so I got off cheap (in my opinion, not my husband's) ;)

Wednesday was also the night we made the mistake of trucking the kids to the nearest Whole Foods (because that is the only supermarket we could find), to get stuff for the hotel. We thought we could save some money by grabbing some snacks/drinks.

We were wrong.

I was especially dissapointed with this Whole Foods outing, because I bought myself some edamame from the sushi counter, and it was frozen when I went to eat it. Frozen.

So, I ate it for breakfast the next morning ;)  (You see a pattern here?)

Thursday we tried to keep it low key, and visited the Central Park Zoo. It's a pretty small zoo, with regular zoo prices, but the kids had fun. Katie especially liked the children's zoo area, where she was able to feed some animals. The only bad part was the zoo's restaurant, which really isn't part of the zoo, but kinda sorta is. The employees were awful, and I'll leave it at that. (Tip: bring your own food, or eat elsewhere.)

We also visited FAO, which was more crowded than I've ever seen, and I've been there on weekends. But, the kids loved it, and got to dance on the giant piano. (I did that once. I actually got to dance on it next to a Beckham kid. So, that was great, since, you know, I probably looked like a giant hippo, and Posh Spice (who was like 6 months pregnant at the time, and about 100lbs lighter than me, still), looked on. Celebrity sightings aren't always so exciting.

Then, Friday happened. I had planned to take the kids back into Times Square. I knew we'd have to check out of our hotel, and didn't want to make them walk too much before we went home. I also really wanted to go to Red Lobster, because I love Red Lobster (shut up), and we don't have any around here (the closest one is in southern CT).

However, I awoke Friday morning to 1000 more breaking news blasts on my phone, and decided we would once again avoid any high traffic, touristy areas. Especially since every 5 minutes there were reports that the bombing suspects were on their way to NY, or there were people being pulled over here, there, and everywhere, and, yeah, no Times Square for us.

Now, this is when we learned we had spent one too many days in the city. K was over it, and B had like spun off into space, he was so overstimulated (this was actually a bigger problem all week, than K's meltdowns).

We tried to get something quick to eat, which unleashed a giant meltdown. K announced she was not eating anywhere she didn't know. This of course meant she couldn't even step foot into a restaurant she didn't know. My husband tried to take her for a walk while I got B some pizza, but it didn't work. We just had to suck it up. My husband put it best when he said K was overwhelmed, and there was no place to hide. We couldn't go back to the hotel, and there was nothing "fun" nearby. No quiet place to duck into. Nothing. After a while, K relented and asked for some chicken...which unfotunately was too peppery, and back into meltdown land we went. Sometimes, you just have to roll with the punches.

 I tried to make things better with a trip to Dylan's Candy Bar, which helped a bit, but, at this point, we all just wanted to go home.

Except, we weren't actually sure we'd get to go home, since the city was on lockdown, and they weren't letting busses in or out. The whole day I was attatched to my phone, trying to keep up with what was going on, and trying to figure out if we could even get back. Not exactly the way you want to spend your vacation.

Thankfully, the day ended on a pretty good note. We found a great playground in the park, and let the kids just hang out until we had to leave. We also learned the busses were going home...kinda. Not back to where our car was parked, but to a park and ride somewhere kinda sorta, but not really, nearby. My dad agreed to pick us up, and drive us to our car (at this point, all the drama was over, so we knew we'd at least be able to get our to our car, even if the bus still wasn't going there).

When all was said and done, we got home around 1am, fell into bed, and all slept late.

Really, it wasn't a bad vacation. This whole post probably reads like the worst vacation ever, but it wasn't. Not at all. And we're really not cheap by regular standards, just by NYC standards. We did have a lot of fun, it was just a tense week, for a lot of reasons. But, that's life. I love the city, but it's definitely a different experience going with kids.

We've decided our next vacation will be on a beach somewhere, though. A nice, quiet beach, where we don't have anything to do, or anywhere to go. Preferably with a pina colada in my hand.

(Phew, that was a long post. Thanks for sticking it out til the end).

Miss Independent

Lately, K has wanted to do a lot of things, on her own. We've been slowly crafting the pathway to independence, but she has started to charge ahead. Way ahead.

It's been a challenge, but I am forcing myself to look at K as a 9yo girl first, instead of looking at her as a kid with autism, who also happens to be a 9yo girl. Sometimes, every fiber of my being screams NO. 

SHE'S NOT READY.

NOT YET.

WHAT IF...

The biggest, scariest thing she wants to do, alone, right now, is take bike rides. This is the kid who even last year didn't want to ride without training wheels, because her anxiety about falling is so high. The only thing that got her on two wheels was the fact that her little brother rode without them, first. Once we ditched the training wheels, she would only ride when we went camping with friends, but not at home. It was a very slow process, getting her to a place of actually wanting to ride a bike, sans panic attack.

And when I say slow process, I mean two years.

But, suddenly, she is all about biking. I am sure when I was 9 I was biking around the neighborhood, no problem. Of course, I didn't have the same issues as K. Also? Helicopter parenting wasn't yet a thing.

Like, at all.

My concern about allowing K to ride alone is that something will happen (a fall, or just getting tired), that will cause an anxiety fueled meltdown.

And I won't be there.

Also, what if someone steals her?

What? It happens!

But, she was persistent. She wanted to go on a bike ride by herself. She could do it!

We thankfully live on a quiet, side street, and there is a neighborhood right around the corner with sidewalks, and very little traffic. We've taken short little walks to the "bridge" in that neighborhood, so the kids can throw rocks, and I figured if something did happen, I'd be able to hear her, anyway.

And I let her go.

And, of course, she was fine.

She was also incredibly proud. She biked back home with a giant grin on her face. One of K's biggest pet peeves is when people treat her like a "baby", and in that moment she felt just like any other 9yo. Not the different kid, for once.

Since then, she's ventured even further, to the first stop sign in that neighborhood. Maybe a half a mile or so, away, where I can't hear her if she yells. A lot further than that little bridge.

We did give her a walkie-talkie, so she could tell us when she got there, and when she was heading back.  The fact that I was OK letting her go, and that she was comfortable going, is huge, though. We are both learning how to forge the path to independence, together.

I am also learning to look at all the things she can do, and push aside all the worries that come just because of her diagnosis. Yes, K is a higher functioning kid, and no, not every kid with autism can bike 1/2 mile from home. But, we can all stand to take another look at our kids, a real honest look, and think about what they can do, and what we just aren't letting them do. I'm sure each of our kids can surprise us, given the chance.

School Choice

I have to admit, I thought choosing a school for K would be...easier. I really thought that one would stand out against the rest. That there would practically be a giant, red arrow pointing down, letting me know, this one was it.

Right now we are choosing a school for an initial 45 day placement. We really need more data on K's emotional health, in order to determine the best permanent placement. The school we choose will be capable of collecting that data, and at the end of the 45 days, we will be told what type of environment K needs to be successful. Picking a school for this temporary placement should be easy. It's not as if we are signing K's life away. It's only for a couple months.

But, it's still excruciatingly difficult.

We toured one school that has a pool. Now, K would live in the water if she could. Water and swimming are her things. I've joked that if she could just be taught while in a pool, everything would be great!

However, this school has students that are a lot more behavioral than K. By more behavioral I mean they use swear words I don't even use, and are more aggressive. Because K has such a low tolerance, at times, for other children, and can be a very anxious kid, a more chaotic classroom just doesn't seem like the best fit.

But, they have a pool. In K's eyes, that's all that matters. She told her counselor she could just ignore the other kids, but I'm not so sure...

Of course, this school has lots of other great qualities. I like the way the school is run, the classes they offer, the fact that there are other kids her age. There's even another girl. It is also run as a school, and not so much a therapeutic center. This appeals more to my husband, for whom education is paramount, not that I disagree. I think K has a lot of potential, and though she does have some learning differences, she also needs to be somewhat challenged to move forward. She is definitely a child who rises to the occasion...or doesn't if it's not expected.

I was able to meet the 3rd grade teacher, and she was extremely nice, and laid back. Although we did witness more intense behaviors (a boy swearing at the teacher, and running from class), what was nice to see is that the boy wasn't immediately pounced on, restrained, or anything else. They have people who, if a child bolts, lead them into a sensory room (not a seclusion room, I was able to see it) to calm down. Restraints are not first line of defense, and they know the kids, and what they will do. They know this boy won't leave the building, so they calmly just have someone monitor him, and take him for a break.

So, while I don't love the idea of K being in a class with kids who seem more intense behaviorally, it was nice to know that if she did have an issue, it wouldn't be a big deal, like it was at her previous school.

Of course, we also have ASD stuff to deal with, and I am not 100% sure how this school would handle that. The pre-teaching. The prompting. There is one teacher for the 3rd grade class, and while there are not that many kids, K is used to either 1)having her own aide or 2)being in a class that has a low student:teacher ratio. I am not sure how she'd do without extra adult support.

When it comes down to it, this school has a population made up of kids who have more mental health issues, and their needs might differ a lot from K's. K is a high functioning kid, but still needs some "autism 101" stuff, and if the other kids don't, will it be done? The lack of these things are always the cause of K's own behaviors.

But, they are a specialized school, and I am used to dealing with public schools, who don't have the capability to really cater to each child. If K did go to this school, they might be able to provide more easily what she really needs, and within a more typical "school" environment.

Then there is choice #2. This school is a completely different from school #1. It is 100%, first and foremost, a therapeutic environment. Honestly, if K went here, I would have no worries. They have a 2:1 student/teacher ratio, and the ability to easily go 1:1. Kids are allowed to choose where they do their work, if they are having trouble in the class, and everything possible is done to make each day stress free. As our advocate described it, it's like walking into a big hug. They deal with kids who have high anxiety, and don't admit students who have intense behaviors, so it's a much calmer setting.

They don't do things like reward charts, because they feel even that can cause a kid's anxiety to rise. If they promise something, they deliver. They don't take anything away. There is no earning. When I say this is as stress free as it gets, I mean it. There are gardens the kids can tend, every child gets an iPad for school, and specials like music are a choice. If a kid doesn't want to go, they aren't forced. I mention music because K, although she generally loves music, has a difficult time in a large music class. Just too loud. Here, she could either skip it, or they would go so far as to allowing her to do music 1:1.

This all sounds awesome, right? Especially for a kid who has learning issues, and anxiety issues. It seems like an easy choice...

Except, nothing is easy. My husband isn't totally sold on this school. They don't push academics the way he would like. K would be the youngest kid at the school, and in a class with one 4th grade boy, and one 5th grade boy. There are no girls close to her age, who could act as peers. The school does have a few girls, but we were told on our tour that K would not have the opportunity to interact with them.  The school is also on the campus of a psychiatric hospital, which makes the husband uncomfortable. He can't separate the school from the hospital, so to him, it would be like sending her to the psych ward. However, since we are looking for data on her emotional health, is there a better place than somewhere dedicated to it?

Again, it's just an initial 45 day placement, but because 1)we don't want her going through too many transitions and 2)things aren't looking too good on the permanent placement front, we are also looking at these places as potentially being where she stays beyond the 45 days. That's what makes it a more difficult decision. Which place would be best for K long term, if it came to that?

Unfortunately, we have a child who doesn't fit any one mold. She isn't intensely behavioral, and a lot of schools are meant to dealt with those issues. She also isn't a kid who necessarily needs a completely therapeutic environment, either, and academics are still something that are pretty important to us.

Of course, we are parents, and every parent has tunnel vision when it comes to their kids. We see one path, but in reality that might not be where K is headed. We don't have a crystal ball, so we have to guess where she's headed, and what she needs. Especially being so young. We just don't know her trajectory, yet. There's still a big part of us that firmly believes K is college-bound, and can find a career she loves, and be successfully independent. We don't want to yank her off that path just yet, but then again, are we just fooling ourselves...

If you've stuck with me this far, I am grateful. I wanted to share what we were going through, and how things aren't as easy as you might think. Getting your kid out of the school system when things aren't working out, can seem like a dream scenario. But, everything that comes after is no cake walk. At least, it hasn't been for us.

This coming week is our April vacation, and the following week we are taking K to tour school #2. After that we hope to make a decision rather quickly, because she really needs to get back into a program. It's hard when you feel your child's future is completely in your hands, and your hands alone. I really don't want to mess this up.

And Then There Were Two

I quickly mentioned it in a previous post, B's newfound diagnosis. One that isn't all that suprising, for those in the know.

Aspergers.

To be honest, since B was a toddler, I've had my suspicions. The sensory issues (OH the sensory issues!) The way he uses language (I sometimes call him my little, old  man, because of the vocabulary he showcases). The ridgity. The stim-like behavior. The restricted interests. The way he prefers older kids, and has trouble getting along with those his own age (sometimes, 4yo's don't appreciate being chastised because they don't understand the finer points of astromony).

Yet, there was a part of me that thought some of his behaviors were learned. The only model he had for a very long time was K, and a lot of B's behaviors mimiced her's. But, there were definite differences, his language abilities being the most obvious. Although, having a first-born who was so language delayed, he could have been typical for all I knew!

I kept myself from having him evaluated for a long time. I wanted to see what happened this year in Kindergarten. If maybe being in "real" school all day, around his peers, would somehow help.

It didn't.

And so I made the call. Of course, in the world of special needs evaluations, time practically stands still. I made the intial call for an appt last September, and only last week did we recieve an official diagnosis.

As I sat in the meeting, going over his testing results, I wanted to tell the woman to just get to the Aspergers part, because I just knew. I had also been down this road before, and didn't need my hand held. Give me the report, make the diagnosis official, and let me get on with life.

But, I kept my mouth shut. I allowed her to go over the testing, piece by piece, forcing myself to not blurt out that I already knew the results, and just needed a copy to send to the school. The whole point of the evaluation was to get him what he needed at school. Period.

You see, B doesn't really bother me. He doesn't worry me. He is an intense kid, yes, but I embrace it. I don't look at him and see a list of deficits. He's happy. He's so, so smart. He has his moments, and struggles, but I just don't have the same concerns I do for K.

His diagnosis made me realize something else. If K was a typical kid, and I knew nothing about Autism beyond Aspergers, I would have a completely different opinion of the "disorder". I understand where people are coming from, who either have Aspergers, or a child with Aspergers, who don't see it as a bad thing. B is only 6, and I know things can change dramatically as he gets older, but right now, it's not a hugely negative thing. I get it.

But, I get both sides. I also get having a kid who was non-verbal for a long time, who throws meltdowns of epic proportions, has no friends, hates life, and is generally unhappy. Who struggles academically. Who has immeasurable anxiety. A child for whom I worry constantly.

If I only had B, my perspective on any Autism disorder would be a lot different. I am grateful that my experiences allow me to see both sides, and how different things can be within the spectrum.

SO.VERY.DIFFERENT. 

Am I saying all those with Aspergers live care-free lives? No. Am I saying all those diagnosed with another disorder on the spectrum live horrible lives? No.

What I am saying is that within the spectrum of Autism, there is also a spectrum of how people are affected, and we have to remember that, and never, ever invalidate the feelings of others. I can personally attest to how differently people can experience Autism. I see it everyday in my own house. I think it's an important point for us all to remember.

As my kids get older, I am seeing ASD (autism spectrum disorder) as just as part of our lives, becuase it's here to stay. I've stopped fighting the diagnosis, the autism itself, and instead have put my energy into making sure my children have the best lives possible, being autistic, or with autism (whichever they choose, or don't choose, one day).

But, I continue to understnad both sides. I continue to support my friends who wish for a magic pill to take it all away, and I support those who choose to see only the positive aspects of Autism. The only life I live is my own. The only experiences I have are my own. I won't ever speak for anyone else, which I've said ad nauseum, and will continee to say.

I now have two in the "club".

And I'm OK with that.

The Journey

I've been a bit overwhelmed lately.

Just a bit.

To make a long story short, we went to battle with our school district over K's placement. We were just d-o-n-e, done. There were a few incidents, that for K's privacy I won't go into here, that completely and utterly broke down trust. She ended up being scared of going to school. Scared of saying anything to any adult at the school. There was a change in her demeanor, from the first few weeks when things seemed to be going well in her new class. Things happened that the school thought were not a big deal, that were the biggest deal to us. So, we hired an advocate, and pushed for out placement.

At first, things didn't go well. If there ever was an us vs. them moment, it was our last official IEP meeting. When the school chooses to bring legal counsel, you know the gloves are off, and working together, collaboratively, is off the table. At least, that's how we felt, as parents.

We spent a nail biting week, waiting for any response from our district. A week that literally almost sent me over the edge, and that's not an exaggeration. A week where things went downhill fast, and where I thought we'd end up living in a ran down by the river, because fighting for our child was probably going to cost us everything.

Our advocate is great, don't get me wrong, but I was still scared to death. We had a good case, but our distrcit wasn't reacting in the way everyone assumed they would. Our pediatrican had pulled K from school at this point, saying she was exhibiting signs of PTSD, and so I had a child out of school, and radio silence from the district. We did all we could to garner a response, and waited. I don't know how many years that one week took off my life, but I hazard to guess it's no small number.

But, then, miraculously, everything turned around. The Superintendent got involved, and we had an emergency meeting with her, the head of special education, and the district psychologist (the one person I had been asking for at our IEP meetings, and the one person they always failed to invited). And they really listened to us. And agreed with us. And...we prevailed. Like, really, truly prevailed. I still have a hard time believing we won, and am always waiting for the other shoe to drop, but thus far, everything has gone well.

Currently, we are touring private schools for K, and she is recieving home tutoring in the interim. Or, she was until our awesome tutor got selected to sit on a jury. Here's hoping K clicks with whomever we get next, just as well. School selection is taking a lot longer than I anticipated. I figured we'd bang out the tours, and pick one within a couple weeks. So far we've only toured one school (with another on the docket this week), and I've yet to even hear from several others (one of which I am really liking for K, inparticular). Next week is April vacation, so this is definitely not going as fast as I would like, but at least we have a plan.

At the end of the day, we did end up spending a good chunk of money on a really great advocate. Getting K into the right program is our priority, though, and even though no one likes to write a big check, it was more than worth it. We had a good case, but hiring someone who knew the ins and outs of the law, and who was a calm voice in a meeting (when all I wanted to do was scream and cry), was priceless.

Hopefully, we can move on and find a great school for K. Fingers crossed.

My "Group"

First, a lot of things have been going on since I last posted. A LOT. And I will get to all those things next week, but first I have something else to say.

It's April. Autism Awareness Month.

Ick.

Don't get me wrong, the more people "aware" of autism, the better. I would love for the vast majority of the populatuon to recognize an autistic kid when they see one, instead of pointing, staring, and making snide remarks. I mean, I don't really see that happeneing, yet, but I'll jump on the positivity train, and reamin hopeful.

It would be great if all this awareness actually granted families access to the therapy they desparately need, and if all the money raised went directly to them, but big business is big business. Each has their own agenda, and what people choose to support is up to them. I'm personally over all the in-fighting, and finger pointing, and name calling. That's just not the type of community I want my children to grow up in.

And, yes, I said children, because as of yesterday B is officially part of the club. He was diagnosed with Aspergers, which was no big surprise, it just means I have to work twice as hard making sure neither kid is screwed over.

What I am getting to is the dark side of Autism Awareness Month. Suddenly, tons of blog posts go up telling you what to think, feel, and believe. What group to support. What language to use. What you are doing wrong. How somone else is doing it all so much better. People decide they know it all, and aren't afraid to come out and say it. They pat themselves on the back for being so smart, and having all the answers, and they go out looking to garner praise from others (which they get, because, let's face it, the world is mostly made of sheeple). Those who refuse to fall in line are the bad guys, and the us vs them part of the Autism community is highlighted even more.

Then there are those who seek the celebrity of it all. Who want to do the most giveaways, have the most shared posts, gain the most followers. Because, really, what's the point of even opening your computer if you aren't going to have thousands of people falling at your feet, hanging on your every word, and thinking you are the king or queen of autism. Photos of cute kids are used as bait. Stories become more harrowing, or falsly uplifting. The voices of adults become louder, and sometimes meaner and angrier. All because what matters is how many people know your name. Obviously.

Having an autism themed blog has become a business unto itself, which is why I have all but quit blogging. That's not me. I do not have all the answers, I refuse to tell people which organizations are right or wrong, and I also know lots of people don't agree with some (all) of what I say. I am not willing to change that just to boost readership.

At the end of the day, I am not autistic. My kids are. They are my group, and the only group I need to listen to. How they choose to be represented, what part they want autism to play in their lives, that is all up to them. What they want to be called, autistic, or having autism, that's up to them. Not me. Not those who have already decided that one way or the other is better. My kids will decide what organizations they want to support. They will decide what all of it means to them. Only them. Because as unique as each individual is on the spectrum, so are their opinions on how they want to live, and be percieved.

The irony of it all is there are those who say no organization can speak for them, yet they think they can speak for every individual affected by autism. No one speaks for my kids. No me. Not another parent. Not another autistic person. Thier lives and identities belong to them, and only them. Period.

So, you will not find any blog posts from me this month, giving you a list of what to think, or where to send your donations. I won't tell you what you're doing wrong, or that everything I do is right (because I screw up on a daily basis). I won't be cramming my opinions down anyone's throat. I won't add to the us vs them debate.

I'll just continue to share our expriences and our lives with you, tell our truth, and work on getting through each day. Who has time for much else?