Taking a Compliment

Why is it so difficult for us, as special needs parents, to take a compliment? I don't mean a compliment about ourselves, I mean those given to our kids.

I see it time and again. Someone says how happy they are for a child's progress, or what great strides are being made, and instead of those words just being accepted, they cause some to get defensive. As though saying how well a child is doing is somehow taking away whatever disability they have. Or that it questions how severe it is, or if it even exists. As though saying, yes, my child has made huge leaps lately, is admitting that maybe nothing was ever wrong.

I admit, I have done this myself. Especially when it comes to the school. I'm always afraid we're one compliment away from services being taken away. Oh, my child had a great day? Crap. Maybe they'll say she no longer needs XYZ. Oh, she's made huge strides since that last round of testing? Double crap. Maybe they'll try to take away the IEP!

It never happens, of course. Our kids make progress relative to themselves, and progress doesn't equal cure. It just equals progress. We should be able to agree when people say how well our kids are doing, without bringing up the difficult times. Without referencing prior test results. Without going on a mission to prove just how disabled they really are.

People telling us when our kids are doing great isn't them saying the disability was never there, or there wasn't a time when things were tough. I've complimented the progress of other children, and then felt bad because a parent got defensive. As though I, of all people, would ever challenge a diagnosis, or regression, or anything else. Saying how well a child is doing isn't saying they are typical. It isn't saying all their symptoms have suddenly disappeared, and they no longer struggle.

I think part of it is we live in a world where people do question whether or not we are just bad parents. If things like Autism, ADHD, and mental illness really exist, or if we have just somehow failed at raising our kids. I think that's why sometimes we tend to focus on the hard parts of life, because we feel we need to constantly prove that the disability is there.

The moral of the story is, if someone tells you your child is kicking ass, or doing awesome, or making progress in leaps and bounds, just smile and say, I know! Or, I'm so glad you noticed! They aren't questioning you, and even if they are, it doesn't mean we can't celebrate our children. They deserve to be celebrated for all their hard work, and that should be the focus. The good. Always the good.

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.