#JudgeyFace

In the past week, we have been away from home at least half the time; doctors that are too far to travel to in a day and so on. One thing of major import in my world, is that our little C is finally going to get some assessments and we are going to finally know what we’re facing. We had our first visit with his new doc. On the first visit, he meets with just the parents to find out what we hope to accomplish and so on with his help. I know we don’t need labels on our kids. I know we won’t treat him differently, except everything will be different. When he’s running down the sidewalk cartwheeling his arms and legs out to the side as he goes, we’re not going to be as frustrated with him if we know that he’s not being crazy, he’s self-soothing. I mean, in some ways, we already treat his oddities this way. We’ve learned from working with his brother that these are the ways that he fills his sensory needs, but it is still really hard to act like everything is fine when he’s running away from you, bumping into other people or sitting upside down in his chair at the restaurant. He’s a wonderful, loving child who seems very ill-behaved at times but really isn’t. We are tough on him. We make him earn his privileges and so on. However, for those not in the know, he often comes off as a wild child.

Today, while trying to eke out a little bit of school work from him, he sat on the table, with an elastic tie around his head and used the tip of the tie to point to the answers as I scribed them out for him. He kept saying that his brain wasn’t working; he couldn’t think but, as soon as I took over the writing, we got a few pages done, as long as I allowed the odd tie situation.

So, something that made me happy: we finally got into this new doctor. Even though it was just one session, I already feel completely validated in some of the hard choices that we’ve had to make about C over the past year. Things like pulling him out of school because it was just too much for his sensory processing. Things like choosing to sit in the cafeteria at a spiritual assembly we attended, rather than the auditorium because the boys could not handle sitting in a room with almost 1000 people, and sitting at a table was easier for them to keep busy than sitting in a row of chairs all day. Fewer eyes on them if they have to move and so on.

Many do not get it, however, and we get the looks. You know, the look. It’s the look that is on the faces of so many strangers who have no clue what you’re dealing with. People, who look at us parents and think that we need to reign in our kids or make them sit more still. “Why does you kid have giant headphones on? Shouldn’t he be paying attention to the program?” You see the questions on their face. They can’t help it and they just don’t get it.

I recently came across this post by Louise Williams: No One Likes a JudgeyFace. She perfectly expresses a parent’s feeling when they get the JudgeyFace. As a parent that sees the face often, I think this is a brilliant article.

“…whilst at the pool when James wasn’t even being that crazy I saw it. The expression people pull when they are making instant judgements about James and I.

JudgeyFace.

Yep. The face that people display when they are appalled by what they see. They were appalled by my amazing son. How dare they?…”

“…They are judging us. They are judging him, for being a bit unusual and me for not doing something about it…”

It’s a known quantity for parents of quirky kids. No matter what you’re facing with your kid, there are people out there that will judge you or your child for not meeting their/society’s standards of “normal”. We just have to find a way to move past it; let it roll off our backs like water on the proverbial duck. (Does water roll off a duck’s back? I don’t know but, it seems like it should so, I’m going with it.)

That is a challenge though. We are fighters for our kids. We want them to have the same opportunity to have a happy, carefree childhood that other kids have. They are most likely oblivious to the looks but, we parents are not. We see it. We feel the judgement and we break a little inside for the lack of understanding, for the lack of normalcy that we don’t have. We could just as easily have a NT child (NeuroTypical = average) and the get the JudgeyFace anyway, and maybe we’d even deserve it. Or would we? As I sit here with my quirky kids, I realize that no one deserves it. No one really, truly knows what another parent is going through if they aren’t living in that family. Sometimes, even our spouses/partners don’t fully get it, because they may be working outside of the home every day. They see a few hours in the mornings and evenings and then on the weekends, but not the daily struggle of the stay-at-home parent. I know my guy tries so hard but, in some ways, he won’t ever be able to get it because he’s not here during the day. Besides, even when he does see it, he doesn’t get it from my perspective because we are totally opposite personalities.

In the post I mentioned earlier, Louise refers to a video called Too Much Information. I love this video! It’s a very short film done by The National Autistic Society that puts the viewers in the shoes of a boy with autism. It breaks my heart and yet I want to keep watching it. I want to be reminded what sensory overload can feel like because it can help to give me the patience that I need to help my boys work through their overloads.

We should be less quick to judge; be more sensitive to the variety of situations that could cause whatever issues brings on that face. Please watch the video and maybe you will feel less like making a JudgeyFace the next time the opportunity arises.

Advertisements

Pity Party Table for One

Spring is usually my favorite time of year; the sun is shining more and more, the temperatures are warm but, not too hot and so on. This year, I’m not enjoying it as much.

First off, I’m still recovering from my sprained back. It’s a slow process and I am a very impatient person. I spend much of my time “resting.” I’m so done with it but, every time I add a bit of work to my schedule, I start to feel it and I have to rest again. I need to be the tortoise in this race and not the hare.

Meanwhile, I’m well enough to start my normal schedule again but I find that I’m exhausted. Then it dawned on me that I’m still dealing with mono. I had actually forgotten about it because I have been feeling pretty good overall. Except that I was feeling great because I was resting so much. With my back injury, I spend a lot of time laying around, not doing much so, my body felt rested. Now that I’m back to my (somewhat) normal schedule, I’m tired and running fevers again. It’s May now and I feel like I’ve been sick for the entire year because there is always something going on health wise in this house.  I’m so sick of it but, I’m stuck with it.

This time of year brings the added stresses of the approaching end-of-the-school-year. E actually did state-mandated standardized testing for the first time, which covers Math and English. We weren’t sure how it would go because he’s never had to take one before. Our previous end-of-school-year process involved putting together a portfolio of work, to show his progress over the year. I thought that was hard but, the stress I had for him for these tests was way worse. They covered one subject each day and had 5 hours to complete the questions. The first day was English and E was done in an hour. He was the first one done. The next day was Math (his favorite subject) and he was done in 20 minutes. Again, the first one done. He felt that he did his best, which is really all I care about but, I am still anxious to learn his score, just to see if I’ve done my job well this year. I know it isn’t that big of a deal because he’s only in 3rd grade and can easily move forward or backward to cover his needs, but I’m still nervous. After testing on both days, he had major sensory meltdown issues from his own nerves. The first day he was very hyper and loud. The second day he was mellow and low-key, and was nauseated all day. Poor kid.

We know C has been identified as a 2E (Twice Exceptional) child but we still don’t know exactly what else we are dealing with. What we do know is that, so far, all the time he spent attending public school caused sensory overload and he needs time to decompress from this overload. It’s almost like he needs to detox his body from the stress. However, this will take time to do. He was under intense sensory overload for about 7 months, so we can’t expect it to be better overnight. The result is that he has a very hard time focusing and getting any work done at home. For home school, we have enough to satisfy the weekly requirements, but he’s not being challenged at this point to try harder. He just couldn’t handle that and honestly his teacher doesn’t get it.

For C, being in Kindergarten, there is no state testing so, we have to work on an end-of-year portfolio. The struggle I’m facing is that I’ve only had him home for about a month. For most of the school year, he was actually in school. Now, I have only so many worksheets and activities to choose from to present in his end-of-the-year portfolio and the due date is fast approaching. (In fact, I really should be working on that instead of posting, but I’m a procrastinator.) The school wants the students to pick a work sample and then do a self reflection on each work sample for each subject. A 6 year old in sensory overload is only going to answer “I don’t know” to everything.

Added to the end of school stresses, we have our remodel to deal with. We still are waiting for our permits but, we want to be prepared to hit the ground running as soon as they’re issued. The problem is that I’m not allowed (physically) to bend and lift objects over about 20 pounds. In fact, I can’t even bend/stretch forward right now while my back sprain is healing. That means all this prep work falls on the hubs and the poor guy is so busy. He’s busy with his daily out-of-the-house job, then doing the housework and yard maintenance that I can’t get done, and now all this extra prep work. There are only so many hours in a day and he needs his sleep!

Waiting is not my strong suit and this whole process is killing me inside a little every day. Under normal circumstances, I would have already started moving the firewood out of the construction zone, prepped and started building the storage shed we bought to hold our stuff during the remodel, and work on my office. Oh, how I am excited to have my office back! I used to have it set up so nice. It was “my” room; a space that could be as girlie (or not) as I chose; a place where I could shut the door and distance myself from the chaos of the house. A little more than a year ago, the boys got to a point where they needed separate rooms for a while so, I gave up that space and we put C in that room. It was small, with only enough room for his bed and a dresser, but he was thrilled. They still played in the bigger room, but they each had their own space to retreat to. After the remodel, they will still have their own rooms but, during the remodel, we needed to move them back in together so that my office space could house our pantry that would, otherwise, be in the construction zone.

It’s all wheels within wheels, and waiting. Our contractor is waiting on the permits and the excavators, the excavators are waiting on the weather and their schedule, and so on. However, much of that waiting time has passed while I’ve been recuperating, and now I have the anxiety and stress that comes with needing a schedule but not having it set yet.

So, with all this stress and anxiety, to be in the warm sun, safely soaking up the vitamin D, would be a wonderful relief. However, everywhere I turn there is work to be done that I can’t do. On top of that, my two boys are afraid of bugs. E has a phobia of bees which has led to a fear of bugs in general, and any bug he sees, he considers huge. C has picked up on this and now he too has a “fear” of bugs, unless he’s around his best friend. This friend is an outdoors kid; I love it. It really helps C get over his “fear” because he doesn’t want to be embarrassed to be afraid. I’m all for it. The more they are together, the tougher C seems. It’s really amusing; positive peer-pressure. However, his buddy attends public school so they have limited time together. In the meantime, I’m basically stuck in the house, anxious over things I can’t control and hunting down tiny bugs that may or may not be in the house.

%d bloggers like this: