We're Listening

As a parent of a child with special needs, I can confidently say most special needs parents have a lot in common, regardless of their children's diagnoses. We are determined. We are strong (physically and mentally!). We are tired. We are amateur experts in several different types of therapies. We are eager to learn as much as we can in order to help our children succeed. Really, we are tired. We celebrate every milestone or accomplishment, no matter how small. We are frustrated because we have to continuously fight every stereotype there is relating to our child's diagnosis. We spend a lot of time driving our kids around from one service to another.

But while we're busy being or doing all of these things, we aren't so wrapped up in our lives that we don't notice things that may be going on around us. We hear you when you bad mouth children with special needs (yes, this happens). We see you when you glance at us with either sympathy (because we must be miserable, dealing with all of this) or disgust (surely there must be something else we can do for our children so that they aren't so awful, right?). We notice when you exchange looks with other parents when our children are having a difficult time (why would we expect our children to be treated as if they are "normal"??). We hear you when you say or write the r-word, and then watch you get defensive when you realize that we heard you (for the record, it's never ok to use that word, and yes, you should still use a different word even if you don't "mean it that way").

Guess what, though? None of your ridiculous behavior gives us pause to stop doing what we're doing for our children. In fact, this nonsense only motivates special needs parents to keep fighting, to continue to push not only our kids to be the best they can be, but to prove that the only thing that needs changing is your attitude towards people with disabilities.

And you know what else? Special needs parents also hear the words of encouragement, share in the smiles, and appreciate the inclusive actions from other parents, kids, teachers, coaches, people who live and work in our communities. These are the actions that overpower all of the negativity, that keep pushing the tired parents to keep going. Because while we know it's necessary, sometimes it's really hard to be "that parent", and that extra bit of support is really what we need to keep fighting.

We're listening. We hear the good, and especially the bad, because we are listening.

Easier?

When the kids were all very small, and we were exhausted and the house was destroyed and we felt like we were behind with pretty much everything (laundry, exercise, relationships), we told ourselves "It will get easier."

The kids are now a bit older, but we are still exhausted and the house is still destroyed and we are still behind with pretty much everything. Can we keep lying to ourselves that it will get easier?

I don't think so.

The truth is that parenting never gets easier. The challenges evolve into different challenges, but I no longer believe that it will be easier to manage everything that comes with parenting.

Parenting a child with special needs throws another loop in the crazy roller coaster of life. Alex is having a terrible day; there have been many more tantrums than moments of compliance (same goes for yesterday). This is probably because our schedule was off this week, and he's out of sorts. This doesn't excuse his behavior; at least, not in my eyes, because we aren't asking him to do anything out of the ordinary. Clean up toys, take a bath, be a kind friend, and (for the love of everything pure and good) stop burping every five seconds; each of these directives has caused at least one tantrum this weekend. I'm out of ideas, and can only hope that Thanksgiving break won't be as exhausting as this weekend has been.

This is not to say that he hasn't had great moments this weekend; that would be completely untrue. Sadly, though, he saves those shining examples of his awesome personality for almost everyone but me. I selfishly want him to reserve at least some of those moments for me (Santa, are you listening?!?), but all I can do is wait out his tantrums, keep faith that he might grow out of this sooner than later, and try not to look ahead and panic over the thought of an even longer holiday break next month.

I do think it's fair to think that things will get better. Better is different than easier, so it's still ok to tell myself that.

At least, for now.

Stimming

Alex has a new habit: burping.

He is making me crazy with it; in our 18 minute commute home tonight, he averaged around 5 burps/minute. That is 90 burps in one car ride. I really can't take it.

I've read that children with Down syndrome will demonstrate a stimming behavior when they are seeking sensory input. So, I've been trying to figure out what we can offer to replace the belching. We've been through this before, with teeth grinding and nipple rubbing (his own, not someone else's, but still...). Before we can find a solution, he seems to move on to another behavior. This one is killing me.

I know his impulsiveness plays into this, but beyond that, I'm stumped. We were told that it's "just a boy thing", but I'm not buying it. Burping at the table, or in class, for laughs is one thing; relentless belching is another. It's gross, it's socially unacceptable, and my nerves are completely shot. There has to be more behind it. Maybe his ears are full of fluid, and this helps him pop them? I feel like that's a stretch. He says there is something stuck in his throat, and that his tooth is loose. I can't piece either of those together. He does have an appointment with his ENT on Friday, so perhaps we can gain some insight from that.

Good, good times. So how was your Monday?

Realizations

Having three kids, one of whom has Down syndrome, with busy schedules, I often hear things like "Wow!  I don't know how you do it!" and "You look frazzled!" and even "You just need to relax!".

I usually blow off these comments, with a smile or laugh, and keep chugging through the chaos.  I mean, I really don't know how I do it, I am frazzled, and if I knew how to relax, I totally would.  It's just not that easy.  If it's not one thing, it's another.  Right now, we're still battling the transition issues that Alex experiences every time there is a change; once (if?) we get settled, it will be time for something new to start, and everything will fall apart again.  Sleep patterns are inconsistent, which throws behaviors for an awful loop, and we never know when the next meltdown will occur.

That's just one small component of what we experience with one of the three kids.  We won't even talk about the behaviors that the little one tries to get away with (apparently, he is trying to take advantage of my frazzled state to try and get one by), my disaster zone of my house, or the fact that I haven't found time to hit the gym in nearly a month.

It all just totally hit me, though.  I am ready to admit it:  I am overwhelmed.  I am tired of all the battles we fight to advocate for our kids.  I get ridiculously jealous when I hear of other families, with kids of comparable ages, doing fun things around the city or on vacation, because it is just so difficult for us to pull off the same type of outing/travels and we usually just don't even try to do so anymore.  I want a tidy, organized house, where I don't lose at least three different things a day because I am so distracted by everything else that is going on.

I think the answer to "How do you do it all?" is this: I can't stop to think about it.  I just do it, or face the possibility of sitting around, freaking out about it.  For now, the end result is me looking frazzled, or tense; soon, I hope to figure all that out, or at least start making small steps to being more organized and relaxed. But, as long as it all gets done (or a majority of it, anyway; I have doubts that this house will ever be as clean as I dream it could be!), I can't really worry about how we get to that end point.

Right?