Is There an Off Switch?

It doesn't really bother me that it's recital season. It used to sting a bit, seeing all the cute, little photos on Facebook. The fact that we never made it through a whole month of dance, let alone a whole season, was a hard pill to swallow. God, how I wanted to pay $100 for a gaudy little outfit my kid would wear once, and see her wave to me from the stage, ignoring any routine she was taught.

But, with age, those feelings have dissipated. I was never angry at people for posting these things, just sad I couldn't do the same. But, missing out on this part of life doesn't bother me anymore, and I truly enjoy sharing in those magical, childhood moments with friends. Plus, I focus on all the awesome things my kids can do, and that always makes me smile.

However, there is one thing I just can't get past: gratuitous internet bragging. This is different from sharing cute little recital pictures with your friends.

Far different.

You know the type...the parents who post every.single.accomplishment online, from potty-training, to academic achievements. Who post (photo-shopped) pictures, telling the world they just can't believe how gorgeous their children are. Or how their kids eat better than yours (only organic!), have more friends than yours (so popular, other children practically stalk them!), how smart they are (she was reading and writing practically out of the womb!).

It bothers me not because I am jealous. I suppose I could share Ben's IQ scores, or the fact that when he was 2, he asked me to paint his fingernails, so look how progressive he is (and, omg, yes, people post stuff like that!), but I just don't understand the purpose?

I'm looking for a real answer, here, if one exists. Why can't we just be proud of our kids, without placing on their shoulders the burden of being vastly superior to all others? Why can't we just mention something once, instead of talking about it day, after day, after day. There's sharing, and then there's beating people over the head with the glory that is your child. Frankly, it's embarrassing to even read.

What kind of kids are we raising, who have been told from infancy how perfect they are, and how beautiful they are, and how genius they are? Thanks to the big A, I worry about my children's futures, but it's not because I've treated them like belong on a throne somewhere. We already have parents calling colleges for their kids, what will this next generation of parents do?

I shudder to think.

That's not to say you shouldn't be proud of your children. I'm proud of mine, everyday. But, there's definitely a line between being proud, and being ridiculous.

I wish we could just focus on raising our kids to be good people. Humble people. Adults who can actually handle themselves in the real world. Forget group homes for those with disabilities, we're going to need group homes for typical kids, who were never taught how to hack it in the real world. Or that rejection happens. Or that you have to work hard in life. Or that the world doesn't revolve around you.

So I say, step away from social media, and into reality. Your kids (and society) will thank you for it, one day (and your followers will thank you now).


(But, I'm a realist, and know mommy wars will never cease to exist. One can always hope, though. One can always hope).

This Woman's Work

I didn't plan to be a stay-at-home mom. Or, really, I wasn't planning to be a mom at all when I had K, so these matters had yet to enter my thoughts. I was planning on going back to school when I found out I was pregnant. To take time off from work (taking classes on their dime), but life is funny in that it never works out the way you expect. At least not for me!

I always thought I'd eventually go back to work. I left my job when I was 7 months pregnant, taking a package deal, instead of waiting to see if my position was eliminated. I figured I would just find a new job after the baby.

But, K wasn't the easiest of babies. For the first two weeks, things were pure bliss. The child barely cried being born, and was pretty quiet the first couple weeks home.

Then, she wasn't.

She cried anytime she wasn't sleeping or eating, and that's not an exaggeration. We bought books, DVDs, white noise CDs, we tried every trick we could find. Nothing worked. I couldn't even take a walk with her, because she would scream at the top of her lungs the whole time. No one could babysit to give us a break, because it was too much dealing with the constant screaming.

Somehow, the thought of finding another job never entered my mind during that time. Then, when K was 4 months old, my husband was laid off, and we decided to move to North Carolina. The move firmly placed me  in SAHM-land, and I got used to the idea.

I figured it would be great to be at home with K, and any future kids. I would be around for school plays, sports, dance classes. I'd be there to see them off in the morning, and when they got home in the afternoon. I could volunteer in their classes. The possibilities were endless.

Of course, like I said, life has a funny way of throwing curve balls when you least expect them.

By the time K was 18 months old, my time was spent shuttling her to therapy appointments, instead of baby dance. As she got older, the appointments increased. Different doctors and specialists. OT, ST, Social Groups, psychotherapy, home ABA...

I dreamed of being the quintessential soccer mom, but instead I was a full time case manager...therapist...chauffeur.

Staying at home took on a whole new meaning. I tried getting a part-time job at one point, but it was during the most stressful time in our lives, and after a year and half it proved too much. I never expected to stay at home because I had to. I never expected that my years as "just a mom" would be spent not choosing cute recital outfits, but instead managing the schedules of children with special needs.

Do I love being home with my kids? Yes. I can't imagine handing them over to anyone else, or not being around for school vacations. Even sending them to school is hard for me. That might just be because of who they are, and what they need, but I do feel that my place is at home. At least right now.

I've  been out of the workforce for almost a decade. The chances of anyone hiring me are probably slim to none, anyway. I recently toured a local community college, because I am interested in doing something different than I did before. Unfortunately, even community college these days is expensive. Too expensive.

I feel like I'm at a crossroads. Back to square one, asking what I want to do with my life when I should have it all figured out. At 18, it was OK to take out student loans, and worry about the future tomorrow, but I don't have that luxury now. It's difficult taking that next step in life, when you are still bound by so many things. Right now K isn't even in school, so I have no choice but to stay home. Sometimes I feel like I will never have another choice, because what if?  I seem to always be needed here. I just wish I felt 100% OK with that.

Part of the problem is feeling guilty that I don't contribute to our family financially. Even though I do a lot, I don't get a paycheck, and a lot of people don't value anything that doesn't come with a W2. We spend a ton of money on therapies and doctors, and I wish I could help with some of that burden. It's always a challenge, feeling valued as a stay-at-home mom, but lately I get the feeling I should make peace with it. This is my life, it's what I'm meant to do, and I do it well. Sure, I'm not a soccer mom, and I don't spend my days volunteering at school, but the job I've been assigned is incredibly important...being the best mom and advocate possible for my two special kids.

And maybe, just maybe, I should be proud of the work I do, and not devalue myself so much.

Just maybe.

A New Journey

I've always written more about K than B. In the context of a special needs blog, he's never been the child that worried us. He has his quirks, but for the most part seemed like a pretty typical kid. His issues never seemed to interfere with his life. All the kids liked him. There wasn't a shortage of play dates or birthday invitations. He seemed happy.

But, lately, things have changed.

I'm now seeing the reason why Aspergers is diagnosed later in childhood. Really, at 6, Ben is still younger than most. Not all smart kids, who are a bit difficult, have Aspergers. Throwing a label on a child isn't something to be done lightly, and sometimes things can be explained away with age and maturity. It just depends on how things progress over time.

But, B's little quirks? Yeah, they started getting bigger, and getting in the way. I had a kid who went from happy-go-lucky, to always frustrated. A kid who had always been surrounded by his peers, struggling to fit in. Struggling to understand simple social situations. A kid who can't ask enough questions, or learn enough things, but who started hated going to school.

A couple days ago, B came home and told me that recess was "horrible" that day. He told me that none of the kids wanted to play with him. They had "other plans". He told me he only wanted to play the time machine game, the game he plays everyday at recess, but no one else wanted to join him. In his mind, they weren't his friends. They didn't like him anymore. He couldn't understand why they didn't want to play his game, and it didn't occur to him at all to join one of theirs.

It made me sad.

He will be 7 in September. He's getting older, and his friends are getting older. They are less willing to give into him. Less willing to let him run the show. His natural charisma is now overshadowed by his inflexibility, and his low frustration tolerance. They are starting to see that he is different. I am thankful that he is a boy, because in my experience it's harder to be a girl and be different. Boys forgive more easily. They aren't catty, and mean. But, they can also choose to just not play your game, so either way B is alone, without the necessary tools to navigate the changing social scene.

This is why Aspergers shows up later on. It isn't glaringly obvious early on, like classic Autism. I've watched You Tube videos comparing a child with Aspergers around B's age (and younger), when you can barely tell, and then several years later, when it's unmistakable. B might only be in kindergarten, but I feel we are slowly getting to that unmistakable stage.

Because of what we've dealt with in regards to K and school, I am determined not to let things get that bad for B. We'll have a new IEP meeting soon to discuss the results of his neuropsych, and I need to make sure everything recommended in that report happens. I need the school to listen to us this time. I need them to understand that helping B now is the only way to ensure we don't end with a kid who implodes down the road. Part of me, a big part of me, truly believes that if our concerns hadn't been pushed aside all these years, K would be in a very different place. Hopefully we've proven to everyone that we aren't afraid to fight for our kids, and B gets what he needs, but you just never know.

For the first time, I am more worried about B, than K. Seeing things get more difficult for him is breaking my heart. Aspergers isn't the end of the world, not at all, but he needs support, and we need to get this right for him, now. Not 3 years down the road. Now.

Ben, with his most favorite thing ever. 

Reality Check

As you know, we have been going through the painstaking process of trying to find K a new school, after the district agreed to place her privately. Getting them to agree to that was a huge victory, yes, but I didn't realize just how difficult it would be to actually pick a school. I realized just yesterday, though, that the only reason it was hard was because of my own expectations, and failure to accept what was right for my child.

The first step in this process is finding K a 45 day placement. This is a school that will evaluate her needs, and at the end of the 45 days they will tell us what kind of permanent placement is appropriate. However, it could also end up that she just stays at this intial school, and so we wanted to make sure wherever we sent her, we'd be willing to send her long-term, as well.

There were lots of things my husband and I thought we wanted for her. A school with an emphasis on academics, because we didn't want her to fall even more behind. A school with other girls her age (this one we knew was a reach, but a person can dream). A school that was pretty much exactly like the public school, just with a more understanding staff, who actually got autism, and anxiety, and learning disabilities.

We were afraid of her being treated with kid gloves. How would she ever be successful in life if she wasn't pushed? If we didn't set the bar high? Sure, we wanted her in a setting that would ease her anxiety, but we failed to realize that in order for that to happen, things would really have to change. We were 100% ready to put her in a school that we worried would bring back our overly anxious, frustrated child. We were just hoping things would be OK because it was at a specialized school. In reality, though, the type of school doesn't matter, if the atmosphere is too overwhelming. Even the best staff can't magically make a child change into someone who isn't affected by what is going on around her.

Yesterday, K had the chance to visit the one option we thought was not going to be a good fit. In theory, it was perfect. A stress-free envioronment. Kids are allowed to work where they want, take breaks whenever they want, and where even the most benign sticker charts don't exist. The staff does everything in their power to make the school day as anxiety free as possible. The kids are even encouraged to bring in comfort items from home. It sounds great, but how does it prepare my kid for life? Even though we have a child whose anxiety could probably power a small village, my husband and I were still caught up in needing K to be placed somewhere that looked like a "real" school. Ironic, since "real" school didn't work for K, and we fought tooth and nail to get her out.

There was even part of me that thought K would hate the school, herself. I was fully prepared for her to charge out at some point, saying there was no way she was going there. During the hour she spent visiting the classroom (without me), I sat in the cafeteria imagining the giant meltdown she was probably having, being soemwhere that was such a bad fit.

What I was not prepared for was how she actually felt.

When I came back to the school after her visit, the first thing she did was throw her hands in the air and proclaim, I love this school! When can I come back!?

It was the first school she said that about, of the several we've visited. My husband asked if it was just because she spent more time there, which is a valid question. However, the fact that the "other" schools had things like swimming pools, and wood working shops, and class pets, and she liked this one better (which has none of those things), is very telling. The other schools she liked because of those "extras". This school she liked because of the kids, and teachers. She felt safe there. Not even the promise of a swimming pool could trump that.

It's also just a calmer environment than the other schools we've seen. The classes are very small, just 4 kids and 2 teachers, each. Pretty much everything is the opposite of what we've dealt with before, and that's probably what K needs.

It was a tough thing, to really sit down and be honest with myself about this whole school search. As much as I tell myself I've let go of all my dreams for K, clearly I haven't. I've always been honest with myself that inclusion just doesn't work for my kid, at least not now. But, I had to take that a step further, realizing any school that is going to fuel her anxiety in any way, is not a good match. It's just something else to accept. Sometimes it's hard to reconcile that the kid who just went for a bike ride alone, is still miles away from her typical peers. At least when it comes to school.

So, tomorrow K goes back for a 4 hour trial at this new school. If all goes well, that's where she'll be going. I know in my heart it's what's best...I just have to let my mind catch up. Letting go of dreams doesn't just happen in toddlerhood, when you are first faced with diagnosis. I'm just beginning to realize that now. K will be who she is meant to be, and I just have to keep reminding myself that. It's what she needs, not what I need.

Right now, she needs this school.

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).