Autism Watch: 2007

Posts Tagged ‘Friends

Yesterday, my husband talked to someone who said “Oh, and tell <our daughter> hi from us!”

Last week, someone said “And how’s <our daughter> doing? And xxx and xxx?” (XXX would be our older kids.)

Family isn’t immune — “Can <our daughter> come to the beach with us?”

We answer their sentence, then say “And BB is doing great…” I sometimes add “Thanks for asking!”

Apparently it’s not an acceptable answer — I’m supposed to just ignore the fact that they ignore him. My “Thanks for asking” comment is usually met with silence.

It’s like autism makes my son the invisible boy until we bring him up.

I realize that sometimes people don’t know what to say. You want to be careful not to say the wrong thing, so you opt not to say anything. But if you recognize yourself as doing this — I think we all have situations where we are at a loss for words — at least say “How’s <BB> doing?” You don’t have to specify, you just need to ask how he/she is doing. It means everything to us when our child is seen as just as good as everyone else’s child. Because he is. We all like to think our kids are the cutest, the sweetest, the smartest, the best..problem is, we all think that way, and a smart parent will realize that.

Autism doesn’t mean my son is dumb. In fact, quite the contrary, he’s incredibly gifted and working at an academic level years beyond his age.

Autism doesn’t mean my son is unaware of what’s going on around him. He’s surprisingly adept at listening to conversations while still focusing on writing HTML for a game he’s designing. He can hear a song once, while playing a game, and repeat it note for note, word for word, weeks later, without ever hearing it again.

Autism doesn’t mean my son is unable to do something outside of his scope of interest. Just like any other child, he’s got a lot of abilities but chooses what he wants to do. In fact, he’s probably more in tune with his interests and abilities than people without autism.

Autism doesn’t affect his hearing. He can still hear you when you let your child get away with calling him a name or when you whisper “It’s okay, go do your thing, BB will be fine on his own.” Again.

Autism doesn’t render him incapable of comprehending your speech. He knows what your words mean. He knows what it means when you say “I’m not going to keep coming to visit you if you don’t hug me.”

(Something I want to point out: that won’t make BB or any other child with autism want to hug you.)

Just because you don’t understand a child with autism or you don’t want to understand a child with autism doesn’t give you the right to be mean. Because that’s what it is: being mean. Ignoring a child for behavior he can’t control is like refusing to help push a wheelchair uphill when the person is a paraplegic, and who would do that?

Next time you deal with a family with a child with autism, ask about the child. Even if you have to fake it, ask. And if you have to fake it, maybe it’s time to re-examine why you feel that way — why does it bug you so much to acknowledge that this family is dealing with a child with special needs? Do you have to agree with everything someone does to like them? No, so why is a child with autism-related behaviors any different? Maybe it’s time to stop letting your personal feelings get in the way and just be the friend, the Godmother, the cousin, the aunt, the grandfather. That means loving the child for whomever he is and overlooking the rest, even if you don’t agree with the way the mom and dad parent him. Love him and respect him, just like you would any other child.

It really is that simple.

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How do you teach your kid that yes, other kids are mean? How do you even begin to acknowledge to yourself that yes, other kids are meaner than you can imagine?

I know, in the scheme of things, focusing on this is weird. But, when it’s a daily issue in your house, a daily facet of your child’s autism, it’s got to be a focus. I can’t ignore it. I can’t teach my child how to work on social issues when the only opportunities he has are negative ones. I can’t tell him that yes, the world is basically good, just seek it out, when sometimes your own faith in people is shot.

Don’t assume this is our only problem — it’s just the one that I’m fired up about so much because lately, it’s worse than it used to be, through no fault of our own, and because it’s something that we can’t control. We can arrange BB’s schedule for optimal success, we can provide proper food for the best nutrition and chance that BB will eat it. We can work with his school to be sure his seat, his homework amount, and the environment, all work together for his own good. We can turn on our air and keep the house cool enough, cut his pancakes before putting on the syrup, and make sure his blanket is washed so it’s soft. But I can’t stop the neighbor kid from telling the only other kid in the neighborhood who Nasty Witch hasn’t gotten to, that they should hide from BB. That they should push him down and tease him. That it upsets him if they call him Stupid. I can’t stop my son from being upset when his friend pushes him down because the other kids says to, or from being hurt at bein called stupid. It’s the uncontrollable factors, the things that are caused by others peoples’ ignorance or refusal to even care, that can negate all the other good you’ve experienced. We adults can blow it off…mostly…but kids? Not so much.

So today,  BB’s friend from school a couple of years ago is over here to play with him. We invited him over and we are so glad he was available and wanted to come. I’ve mentioned him before, how cool both he and his family are. They’re outside now, on the slip and slide. Oh wait, they’ve unplugged it (and put it away? who are these kids??) and now have the backyard hose going down the slide on the playset. Can you say mess? And cost? But I won’t stop them for a million dollars. They are smiling, having a blast, and being creative. Who can fault that??

Yep, another one of those entries, the kind where I share an incident where my son overcame a difficulty but my heart still breaks for him. No tissues necessary.

Waiting at the gate, he’s late coming out. I see the little girl he has issues with walk around the corner sniffing. Finally, I find him sitting on a bench talking to his teacher. That in itself is an ‘oh no, what happened now?’ moment, but do you ever have times where you look at your child and you are so overwhelmed by love and a bit of fear for him, and this overwhelming need to grab this beautiful little miracle and run away to an island? This is one of those moments.

He’s sitting next to his teacher, who is patiently explaining how to better handle something. He’s looking in her direction..at her shoulder or somewhere in a distance, as he’s nodding in response. His eye-contact is nil. He’s wearing a polar fleece ear-warmer on his hand, upside down. (Someone gave it to me.) He’s flapping his fingers, and he’s wearing his ‘weighted’ shoes (aka heavier shoes that don’t quite qualify as casual shoes or dress shoes or boots and are definitely not sneakers), tapping a foot up and down. He looked SO. DARN. CUTE. It was like someone was pulling out my lungs, I wanted to just hug him and never let go. This stupid autism, how dare it mess with the ability for my child to just be a child?

After a little more talking, where I learn he’s not in trouble nor did he cause any, I also learn that the teacher’s working on a way to resolve these issues between two kids that entirely rub each other the wrong way. I try to get ds’s attention, but at most I get a glance to where I’m standing, no higher than waist-high. No pretty eyes for me either, and I live for those pretty eyes. I can see my little boy shrinking inside himself, and my heart just contracts. Does this ever get easier?

Social skills are so undervalued in society. People think that being a loner is okay if the child wants, but what if the child doesn’t want it? What if the child wants to make friends but just doesn’t know how? What if he can’t pick up on the nuances and subtle body language, facial expressions or even sighs?

This morning, I took him to school in the midst of gale-force winds. (Did I mention that winds usually make him anxious?) He sees a little girl he likes (“Just friend-like, Mom, not girlfriend-like, but she wants to marry me still.”) and asks if she wants to play with him. He doesn’t really look at her, just talks in her direction and has this little smile on his face, almost as if he’s trying not to smile and is afraid she’ll say no. She says “Hmmm, what about recess and lunch but not now?” He comments back that he just wants to play with her whenever “if you want to, though.” She agrees, and out comes the rest of the smile, though he was really trying to hide it. Again, my heart just ripped some more. This precious little boy so wants friends, so wants to play and so wants to not have the anger issues that he does. And I so want that for him. I only wish I knew how to achieve it. The island won’t help, I know, but at least he can’t get his feelings hurt there.

On the heels of my rant about how rude people can be, my son came home after experiencing it from a different perspective…again.

It’s no surprise that my son has a hard time with friends. Social skills are a huge part of any autism spectrum disorder. It’s a misnomer that all autistic kids don’t want friends — many do, they just don’t know how to go about it, and my son is one of them. He wants friends, desperately, though he does want them on his terms, something we’re trying to work on. (Honey, sometimes you have to play what your friends want. You can’t always talk about Pokemon. You aren’t always in charge. And so on.) He’s learning slowly how to fit in and join an activity, but it’s a vicious circle. I teach him on the assumption that other kids are going to be nice, when one yesterday told him he wasn’t as cool as another kid, so they left with the ‘cool’ kid, and another one held up his fist in a threat if ds played with them. Maybe this behavior’s allowed at their house, or maybe the parents don’t know, but it’s so hard to teach a kid social skills when their role models aren’t so hot.

So while he’s laying around wrapped in his blankie, home sick today with a lot of congestion, I’m wondering how to help him and what tomorrow will be like. He’s got what he calls “The Master Plan.” He’s going to be ‘cool,’ and kids will like him and leave the kids from yesterday to play with him. For his sake, I really hope it works. (I was just glad we moved on from the point where he wanted to hold his fist up in return, but he does realize that it’s an aggressive response that could get him in trouble so I think we’ll be okay. He’s SO afraid of having to pull a card, especially if he has to go to the bathroom outside of recess/lunch, so I had to let him know that his IEP, or “the meeting Mommy and Daddy have with the principal” says that he can go potty if he needs to, though he’s still supposed to try to use other accepted times as much as is possible. I think that’s preferred for everyone over him having an accident and needing to be walked to the nurse and miss class time for a clothing change, along with the teasing that he’d be at risk for.)

When school first started, social issues were at the top of my List of Worries. (Is it just me, or do we not all have one when our kids are in school?) I worried that he’d not find friends to play with him, and that, like last year, there’d be numerous birthday parties but few invitations. (I’ll save you my rant on how often he’s left out…for now, at least. I’ll probably rant on it at a later date.) I just hoped we’d not have the copious amounts of tears. It breaks my heart, and like we sat last night with him on my lap, I want to protect him every single day. The fact that this is something that’s not tangible and is harder to ‘fix,’ I’m concerned. I think he’s anxious about it all, and I know stress makes his behaviors worse. And the tantrums, anger and yelling have been much worse these last two weeks.

Until the IEP, I’m going to be working on my goals and needs for school, things I want written in the IEP, and possibly have a pre-IEP meeting just for a “this is my son and this is what he does” introduction. (Personally, I think those should be mandatory when a special needs child is placed in inclusion, but who am I.) I hate to be “that mom,” you know, the mom that the teacher sees, wonders if she’s been noticed, and if she hasn’t, wants to turn and hide. But, I can’t send my son off every day wondering if he’s going to be a mess that evening from school-induced stress or social issues that have him convinced he’s entirely unhappy.

In the end, it keeps rolling through my mind that it shouldn’t be this hard to be a kid. What comes more natural than just wanting to play and having friends. Autism is just wrong, and it’s a rare thing that I get mad at it, but right now, I am. Autism steals away some of the normal childhood fun. Sometimes I have to remind myself that just because I think he should do something doesn’t mean he should; if he’s happy not doing it, great. But when he wants to do something, and can’t because nasty autistm-related issues get in the way, it’s just wrong. It really shouldn’t be hard to be a kid.


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