Disability and Celebrity

I’m sure you have seen the videos that have been popping up, slightly more frequently in recent years: some student with a disability making an amazing shot in basketball, because the coach told him to suit up for the last game of the season, or the boy with autism who was voted Homecoming King, or the many others that are out there.  You can often hear the crowd chanting the person’s name, and screaming wildly when the shot is made, or the name is announced.

My kid is a bit of a celebrity at his school.  Everyone seems to know his name: students, parents, even kids who are older and in middle school who live  in the neighborhood.  We go somewhere in town, and someone says hi to him and calls him by name, and I have no idea who it is, and many times, neither does he.  He’s a celebrity, partly because they have such good programs to “initiate” the general ed kids into what their ASD classmates are experiencing, and I think partly because he’s a “6th year” student at his school, having attended the same school all the way through elementary.  The longer you stay in one place, the more people with whom you come in contact.  That’s my theory, anyway.

But, I watch these videos, and I wonder.  I wonder if this “celebrity” is an entirely good thing.  I wonder if it would be even better if there was no news story, because it would be a matter of course for someone with a disability to win Homecoming King.  It would be a matter of course for kids with disabilities to compete in sports, perform in music programs, do whatever it is that typical kids do, and do it well.  And it would be a matter of course for our kids to have friends, rather than fans.

Until that day, I will continue to share these videos and spread the hope that they bring, because they do leave me hopeful, if not entirely satisfied.  I am always proud of the person in question, but I am so hopeful for those kids who are “fans” of the person in question.  I am hopeful that someday (if they haven’t already), they will realize that this person is real, and not a character.  A potential friend, rather than a celebrity.

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Pre-Organizing My Kitchen

The Man, The Boy and I went to our local IKEA store last week and walked out with… nothing!  For the first time ever (as far as I can recall), I walked out without buying a single thing!  But, I did pick up the IKEA Kitchen Dreambook, the Buying Guide called “Storage Solutions for Your Kitchen”, and the Kitchen Planning Guide, all free resources from IKEA.

free resourcesWe’re not buying a new kitchen anytime soon, but I have been looking for ideas about how best to organize the one we have (the one I’ll be moving my stuff into this year).  Because I know that, like goldfish, stuff tends to grow to fit its surroundings, and I don’t need more kitchen stuff.  I just need to store it in a smart way.

I haven’t given it a thought until now because my current kitchen is tiny.  As in, I have three drawers, and seven total cabinets.  Stuff is hidden, but once you open those cabinets and drawers, you’re on your own.  Good luck finding anything.

I also checked out the book, 1001 Ideas for Kitchen Organization by Joseph R. Provey in January (and I’ve renewed it so I can continue to ogle the pictures).  It also has many ideas for storage, even if you are just re-organizing and not building new, and has lots of how-tos for retro-fitting existing cabinets with new features to make them more functional.

My next step is to catalog all of the kitchen items that will be making the move, and classify them according to the three main work zones: cooking, washing, and storage (sounds like a perfect job for Excel – I know, I’m a dweeb).  Once I have that accomplished, I can start to allocate items to certain cabinets, so that when I pack them for the big move, I can pack them and  label them according to work zones, and even cabinets.

And finally, based on my planning, I can get The Man to work on retro-fitting our cabinets with pullout trays, lazy susans, and helper trays.

Tee-hee!

Crazy Busy Week

Don't Worry - that's not my hairy arm! (stress by bottled_void)

Don’t Worry – that’s not my hairy arm! (stress by bottled_void)

This week is one of those where I just know I’m going to be stressed out, and after the huge meltdown this weekend, and The Man leaving, I’m rather dreading it.  I have an evaluation by my boss, multiple after school meetings that will last multiple hours, the landlord is due to come over to inspect the house to see what needed repairs there are, and I have an evening school event.  I also have to be “on call” for a nonprofit board meeting, you know, one that I backed out of because I was so busy this week…

The bright spot is a Girls’ Night Out right in the middle of the week — I just hope I can enjoy it with the rest of this going on.  And I hope the forecasted snowstorm doesn’t mess that up!

I also hope The Boy is OK with a babysitter for two nights in a row.  Usually it isn’t a problem, but after this weekend, I’m a little skittish.

All I can do is take it day by day, hour by hour, and just try to stay as calm as possible.  Oh, and remember to breathe.  And maybe stop for some sweet tea on the way to work, or pick up a magazine to read for the evening…

Anyone else a little crazy this week?

Another Huge Meltdown

We don’t often see huge meltdowns from The Boy.  We are lucky.  Yesterday, we paid our dues.

We were at a big show in the downtown-big city, at a large convention center, and after being told he couldn’t do an activity because it was time to go home, The Boy started yelling.  I gave my purse to The Man and began walking The Boy to the front of the hall, towards the lobby.  He was yelling the whole time, and got away from me a couple of times, but I eventually got him out to the lobby.  I don’t know what I expected when I got there, but it surely wasn’t the full throttle, running, kicking, screaming (“I’m going to kill you!”, “I’m going to call the police!”), escaping, knocking-down-signs, knocking-down-mom kinda thing I got.

Yep, I got tossed, too.

The Boy is bigger, although he was plenty to handle the last time something like this happened.  I cannot just pick him up (or even attempt to) anymore.  At one point, I looked at The Man and said, “I don’t know what to do,” and there was nothing we could do.  We let it peter out, got him seated on the floor near the coat check, and then my brain kicked in.  He was not listening to me (all I was saying was “stop” because I knew he was too far gone to listen to anything else), so I got on the phone and called people I thought he might listen to.  I got a hold of his ASD teacher, who agreed to speak to him, and within a minute, he was ok enough to get his coat on so we could head home.

The Boy spoke to Fantastic Babysitter in the car on the way home for quite awhile, which was an excellent distraction, and had the desired calming effect.  When we got home, I let him be for awhile, and then we talked about what had happened.  I’m not satisfied that we’ve processed it properly, but I’m going to keep working on it.

The Man and I were shaken, but he was perfect.  He held my purse, and followed us (but not too closely!) during the whole thing, even speaking with a few people who were concerned.  He said this morning like he felt he hadn’t done enough, but he did — he helped me with the aftermath, my aftermath.  I was wrecked, emotional, and exhausted, and he took care of me.  That’s what I need from him — I need him to look after me, so that I’m OK to look after my son.

It was an emotional day, but I was proud of myself for remaining relatively calm, and not resentful of The Boy at all.  I felt so bad that we had a breakdown in communication, and I felt bad that he lost control.  I can only guess what that feels like, and I’m sure I wouldn’t like it.  I was proud of him for coming out of it, and I was proud of The Man for how he handled himself.  Now I need to go see what I can do about these sore muscles…

Give Me A Break

Still, after six years, I cannot stop the self-recrimination that results from one of The Boy’s meltdowns: “I should have anticipated (fill in the blank)”.  It’s a constant subconscious stream of things I should have or could have done to avoid the situation, and why was I so stupid to forget them.

Of course, I don’t really think I’m stupid.  But in the heat of the moment, I blame myself for not being capable enough.

So here is my message to myself in the future when I feel this way (feel free to use it yourself, but you might want to insert your own name for maximum effect):

“Hey, Annie! Guess what? You can’t anticipate everything!! It’s not physically nor mentally possible. There’s no way you could know that xy&z were going to happen, causing The Boy to do ab&c. Stuff happens. You just have to do the best you can, try to roll with the ‘stuff’ as best you can, and hope that it will pass soon. Breathe…”

Thanks for letting me get that off my chest.  I know I’ll need to hear (read) it in the future.  I just hope I listen.

The Angry Ex: Personal Attacks

The ex hasn’t paid child support since November.  I know how the system works, and at the two month mark, I called our state system and asked what we could do.  The lady on the phone initiated action, and told me to expect notification of the action in the mail in four to six weeks.  In the meantime, the promises from the ex rolled in, explaining that he was supposed to get his tax refund, so I should see the full amount owed in the account as of this Friday (and to let him know when it posted).  And then it was, OK, it should be in there this Friday.  And then there was no text or phone call for a couple of weeks (and, funny enough, no money, either!).

Today, a payment of $100 showed as being posted.  I admit I poked the bear, but sometimes I have to tell it like it is.  I texted him, “So, not the full amount, huh?”  I just get tired of the incessant lies, and he did ask me to report about what was posted…

What came next was a barrage of personal attacks and excuses, trying to explain the various payments he claims to have made, and asking me if his girlfriend’s kids should suffer so that I could be more comfortable.  You know one of those “1 of 3” texts.

Oh, I was tempted to respond in kind, but instead, I stuck with the facts.  I reported to him that the money he said he had deposited hadn’t posted, and that we had only seen $100 on our end.

He retorted with even more personal attacks and excuses, and I didn’t respond (but I did take a screenshot of the texts!).

You see, even though the personal attacks were directed at me, they weren’t about me.  He has anger issues, he enjoys conflict, and is quick to blame anyone else besides himself for his situation.  This time it was his girlfriend’s car troubles.  Next time it will be something (or someone) else.  In any case, it’s not my problem.  He has a financial responsibility to his son, and that’s not going to go away.

And I got my copy of the notification of action taken against him today.  I’m so glad I’m not alone in holding him responsible.

Boy Bonding

The Man and The Boy have a ritual.  When The Man is here (or when we are there), they have evening wrestling matches, which are entertainment for everyone in the room.  Here, we have an old futon mattress, which we use as a crash pad, and that is our “wrestling mat”.  They have three rounds of two minutes apiece, and they try to take each other down (The Man uses this time to try to teach him actual wrestling moves).  This allows them to be goofy, and have their own “thing” that The Boy looks forward to all day long.  The Boy even dresses like a luchador, complete with mask and sometimes long underwear, and this week, The Man even got into it and developed his own costume.  It was one of the funniest things I have ever seen, but I think he would kill me if I posted pictures of him, so you will have to settle for pictures of The Boy.

The Luchador

Without really knowing it, they are also providing The Boy with much needed (and craved) deep pressure, as The Boy is often hyposensitive (the type of kid who crashes into walls and loves water because s/he can’t always feel where his/her skin ends).  It’s also a fantastic way for them to relate to each other and build their own fond memories of each other.

Understanding

On days like today, I wish I could put my forehead against his and project to him what I am thinking so he could understand. We are having a hard time communicating, and everything is getting lost in translation. No, you cannot keep a magazine that got left in the bathroom and is now covered in pee. No, I do not have a piece of paper without a crease in the middle. No, there is nothing we can do about it. No, we can’t go get a new battery for your watch this very second. No, it is not my fault. “No” does not mean I am being mean. “No” does not mean that I do not love you. Please calm down. Please understand.

No Time To Be Scared

When The Boy was born, he was two weeks early and a tiny little thing, but he was still considered full term.  It was a long labor, but he was deemed a healthy baby boy, who had no problems nursing, and we were sent on our way.  Once home, I started to worry about how much he was spitting up, and also by the color of it.  We had been assigned a pediatrician through the hospital, and we called with our concerns.  We were basically poo-pooed as newbie parents and told not to worry about it.  Except that I had done more than a fair share of babysitting in my time, and this was not right.  When The Boy projectile vomited across the kitchen (our very large kitchen), we went in.  The doctor looked at his bib, with the yellow stain on it, and then all of a sudden she was concerned.  She took the bib, walked out of the room, and then came back and told us if it happened again to go to the emergency room.  Even as a newbie parent, I was less than satisfied with that response.

We decided to get a second opinion.  Same medical system, different doctor.  After explaining what had happened in the past two weeks, he asked, very casually, if we had had an “Upper GI”.  Umm, nope.  The previous doctor told us that would be too invasive.  He replied that it wasn’t invasive, the baby drinks some milk-like stuff, and they take an X-ray to track the liquid through his gastrointestinal tract to see if there is a blockage.  Made sense, didn’t sound invasive, and one was scheduled ASAP.

We brought The Boy in, fed him the stuff, and then we were met in the waiting room by an intern who told us that our son would be having major intestinal surgery in a matter of four hours.

Words cannot describe the shock and fear we felt, but I appreciated the professionality and care from the staff, and kept thanking the stars, the heavens, God, and whoever else that would listen that we had gotten a second opinion.  The Boy had a “malrotation of the intestine” and they told us that if he hadn’t had the surgery within the next 24 hours, he may not have survived.

We went straight to the surgery waiting room and waited.  And it was quite possibly the longest and worst day I have ever been through, although we really didn’t have time to be scared, and were still in shock.

peanutHe did exceptionally well in the surgery, and was admitted to the hospital where one of us stayed with him round the clock for the next week.  He was not allowed to eat or drink anything except sugar water until his system was completely clear, so that they could make sure the surgery was a success.  I didn’t realize it at the time, but I look back at the pictures and he looks like a little baby skeleton.  My parents hadn’t even met him yet!

I was still healing from childbirth, and taking shifts being there, lack of sleep, worrying…  It was a trying time.  The surgeon was fantastic, checking up on the little “peanut” as he called him, and pretty soon, we were able to take our baby boy home again for the second time.  It was never lost on me how very lucky we were and are that all was well in the end.  Except, as the surgeon explained about the scar on his belly, “He’ll never be a Chippendale dancer.”  I think we can all live with that.

Do People Ever Change?

I ask that as a truly philosophical question.  In my personal experience, it takes a lot for a person to change.  Conditions have to be just right, including the person’s own desire to change, having the ability and wherewithal to put in the actual hard work of changing, and having some sort of positive reinforcement.  In other words, the stars have to align.

Maybe it’s a cynical point of view, but as I said, it is based on my own empirical data, my own worldview and my own experience.  I know that changing my habits to include exercise have been a monumental task, with only limited success.  I can’t imagine what someone who is attempting to quit smoking, or trying to become a more positive person goes through.

Awareness is the first step, though, and some people do not even choose to be aware of their own habits, or ways of being that may need changing.  Of course, if they are happy with who they are, and everyone else be damned, that’s perfectly fine – we all have free will.  But that person also must accept the possible consequence that all of those “damned” people may not stick around for too long.

Tiger PairSo who cares?  Well, as one who is soon to be joining households with a long-time bachelor, I do.  Change is inevitable, don’t you think?  A friend of mine who went through this process a few years ago (and is still, as it is an ongoing process) said the other day, as I was talking about this very subject, “He’ll change.  You’ll see.”  In fact, I think we both will.  We all will.

It takes a little bravery on the part of a good friend or partner to bring up to the person that their habits or ways of being may need to be considered.  That loved one must realize that an argument will most likely be the outcome, because most people will react defensively.  If they truly love you, though, they will consider what you have said, and will really begin to think about changing his or her own behavior.  In fact, that love is another ingredient for change.  We make adjustments for the ones we truly love, don’t we?  We want them to be happy, and usually find it within ourselves to contribute to that happiness.  This, too has been my experience, already in this process.  You have to truly care about each others’ feelings, and trust that your partner isn’t trying to hurt you, but bring your attention to something that could make your lives together a little more harmonious.

Trust.  Love.  Desire.  Hard work.  Strength.

Sounds like a recipe for a good marriage to me.

What are your thoughts?