Tuesday, June 26, 2012
Someone Who "Gets It"
I got a phone call today from someone very dear to me. I have known this woman since we were children. We get to see each other once, maybe twice a year. She has a special needs child too. Her child's condition and needs are different from my son's, but as most of you know, there are certain aspects that are common to all parents of special needs kids.
There wasn't any one particular point to her call. She began by asking me about Boo's recent difficulties with "the itches." She said that she had described the situation to her child's therapist and asked for any insight they may have. And though the therapist hadn't offered anything concrete, just the fact that she had thought to ask for our sake moved me deeply. We talked at length about the various things we face and deal with because of the needs our children have. We talked about doctors, coworkers, friends, and family members. We talked about how we can be so grossly misunderstood as mothers, and how our children's needs can be misunderstood also. When we decline invitations to restaraunts, bowling alleys, crowded places and outdoor events because of our children, we are not being selfish, overly protective, or attention seeking. We know our children, and we know their limits. We know what sort of things can trigger problems for them, and we will remove them from those things before the problem makes itself evident to others. Just because you can't tell what the reason for our actions is, doesn't mean we don't have one.
We also talked about some of the comments and questions we receive from others who, for all that they are well meaning, are nonetheless ignorant. People who think they know more about our child's needs than we do, or who compare aspects of our children to themselves or to their own typically developing children. She told me of some of these comments she has recently dealt with. I told her that what sucks for me is that people have such good intentions. It sucks because when they make comments that are rude, ignorant, insensitive, or just plain wrong, I feel like getting all up in thier face and giving them a piece of my mind followed by a good sqeeze around the neck...but I can't...because they mean well.
But what really hit home for me during this phone call was that she said the reason for her call was not to discuss any particular person, issue or incident, but rather she just wanted to talk with "someone who gets it." Boy oh boy do I ever identify with that feeling! There are a great many people in my life and Boo's who love us, who know him and handle him well, who have educated themselves and who have walked this journey by my side from day one. And I am forever thankful to God that these people are in my life and his. But they don't get it. Not really. They try. They want to. They come really, really close. But the fact of the matter is, they can't get it. He's not their child. They can't get it any more than a person who has been blind from birth can really understand color, or someone who has been deaf from birth can comprehend music. It's something that you have to live, to experience, in order to really, truly, GET IT.
This does not mean that there isn't value in awareness. We still need to work to help the general public understand. With education comes acceptace, kindness, and empathy. With awareness comes a world in which our children have the space to just be who they are. But people who don't live it will never truly get it. And that is why we need each other. That is why community is so important. If you are new to this journey, I urge you to build a support system within the community. Join a support group, go to an online forum, build a facebook family, whatever it takes to create a bond with people who get it. Because one day you will need to make that phone call. And another day you will receive that call. (or email...or private message...) And in both cases, you will be so very very thankful that you have each other to whom you can reach out. To paraphrase Woody from Toy Story: "Special Needs Parenting Buddy...if you don't have one, GET ONE!"
Monday, June 18, 2012
Never
Sometimes a thing can be eating away at you, fraying you around the edges, making you uneven, and you don't quite realize it. At least not on a conscious level. Not until it compromises enough of your delicate and intricately woven emotional defense structure. And suddenly you find yourself bawling your eyes out as you drive down the road past fields and cows and tree rows. You wonder why you're falling apart over the loss of what you never even actually had. But there it is. Hitting you over the head like an acme anvil falling from the sky. You've tried to lock it away in its own sacred special corner of your heart all by itself. But it refuses to stay. It seeps out little by little, and colors every other part of your life and experience. You see things as they are, but you simultaneously see them as they might have been if only... You're walking around with an invisible wound that refuses to heal, which is all the more painful for the fact that no one else appears to remember that you were ever wounded. And yet, you don't truly want it to heal because the pain is all that you really have left of it.
I never knew if you are a boy or a girl.
Never knew if you have straight hair or curls.
I never got to rock you to sleep.
Never brought you home to keep.
I never held you in my arms.
Never fell captive to your charms.
I never kissed your tiny head.
Never laid you in your bed.
I never heard your precious laugh.
Never gave you your first bath.
I never named you.
I never even met you.
But I want you to know that I will never forget you.
It Is What It Is
I follow a lot of other blogging/facebooking parents of spectrum kiddos. For the most part, they help keep me sane. They educate and inform my opinions and ideas. They expand my horizons. They give me support. They give me hope. They show me what is possible, where we can go in time. They show me that it won't always be like this. They also show me that it's OK to be real and to say "this sucks." They show me that I'm not alone in either my experiences or my feelings about them.
I try really hard to keep the overall vibe of this blog positive. I don't want to come here only when it's hard and I need to vent, neglecting the times when it's awesome and I can brag. I want this to be a place that reflects our life: full of love, usually happy, often difficult, sometimes heartbreaking, but always...ALWAYS worth it. The last few weeks it's been a little harder to keep my balance. And because I follow those other parents...I realize that I'm not alone. It seems the overall trend in the community right now is "this is freaking tough." And little wonder...for most of us, school recently let out for the summer.
Today was the first day of Boo's swimming lessons. He was showing token resistance to the idea ever since I wrote it on the calendar at the beginning of the month. But he gives token resistance to almost everything. I just ignored it and didn't push. But when the time came this morning, it got really ugly really fast. He is scared of the very idea. I believe the real core of the problem is that there is absolutely nothing in his experience that even comes close to this, and he has no idea what to expect. When he doesn't know what to expect his anxiety goes through the roof. He bawled and refused to leave the house. Reasons he gave were mostly along the lines of being afraid that he would go underwater. No matter how much I assured him that they do not have you go underwater, we stay in the shallow part, Mommy will be right there to keep you safe...nothing helped. He just couldn't visualize it and he was terrified. I never insisted that he had to go, but I kept trying hard to encourage him to go, trying to help him understand what it would be like and that he would be safe and have fun. He would hear none of it. He kept begging to watch TV, play on computer, or play with my phone. I wouldn't let him have any of those things if he refused to go to swim lessons. That brought him to full blown meltdown. Not quite the nuclear variety I had seen in recent weeks, but a meltdown nonetheless.
And as tends to happen, Boo's meltdown brought on one of my own. He flung his body at me, pushing, swinging, hitting, kicking my body and shrieking high pitched sounds. I removed myself from his clinging limbs, which is no small feat, and walked to another room. I picked up my phone and started typing out a text to my mom. I wasn't three words into it before I couldn't see the screen for my tears. "I f*ing hate this Mom. I hate autism and I hate the agony and anxiety it puts my kid in. He shouldn't have to fight so hard to just BE. It's so damn unfair. I just want to rage but there's nowhere to direct it."
And even as I typed it, I felt like I was betraying my child and the entire autism community. I thought of all the blog posts and facebook comment threads I've read about how people would never dream of taking autism away from their child if such a thing were possible. And I know that its so much a part of who he is, and that I need to love and honor and celebrate it as such. But there are times, there are days, when if I'm being really brutally honest...with myself as well as with all of you...I have to admit that my real feelings are more along the lines of "autism can kiss my a**." And I have vowed to be honest here. Not that I'll tell you everything, but that I will keep it real. I won't gloss over the hard stuff, nor will I sensationalize it. Because the only way we can move others from pity or intolerance to understanding, is to be real. Because as my husband always reminds me, "it is what it is." There is no need to try to excuse or qualify anything. It just is what it is.
So today, yeah, autism sucks and I hate it. Not because it is hard for me, though it can be. Not because I have trouble getting Boo to do what he needs to do, though I can. Not because I have to adjust my hopes and dreams for my son to reflect both his strengths and his limitations, though I do. I hate autism because it makes it so damn hard for my son to just BE. I hate watching him fight his anxiety. I hate watching him writhe and rage when he can't stand the feeling of being in his own skin. I hate watching him try so hard over and over to be sociable with his peers only to be met with blank stares when they don't know what the hell he's talking about. I hate watching him instantly transform from joyfully blissful to terrified when assaulted by a sudden strange loud noise. I hate hearing him beg through tears "I just wanna go home" when he is home. Just as any parent, I hate seeing my child in pain.
And to be fair, there are ever so many more things that I love about his autism, and the person it makes him. But those just aren't making the highlight reel today. And that's OK. Those will appear in another post on another day, and hopefully it balances out overall. Because I promise you I don't always feel this way. But for now...it is what it is.
I try really hard to keep the overall vibe of this blog positive. I don't want to come here only when it's hard and I need to vent, neglecting the times when it's awesome and I can brag. I want this to be a place that reflects our life: full of love, usually happy, often difficult, sometimes heartbreaking, but always...ALWAYS worth it. The last few weeks it's been a little harder to keep my balance. And because I follow those other parents...I realize that I'm not alone. It seems the overall trend in the community right now is "this is freaking tough." And little wonder...for most of us, school recently let out for the summer.
Today was the first day of Boo's swimming lessons. He was showing token resistance to the idea ever since I wrote it on the calendar at the beginning of the month. But he gives token resistance to almost everything. I just ignored it and didn't push. But when the time came this morning, it got really ugly really fast. He is scared of the very idea. I believe the real core of the problem is that there is absolutely nothing in his experience that even comes close to this, and he has no idea what to expect. When he doesn't know what to expect his anxiety goes through the roof. He bawled and refused to leave the house. Reasons he gave were mostly along the lines of being afraid that he would go underwater. No matter how much I assured him that they do not have you go underwater, we stay in the shallow part, Mommy will be right there to keep you safe...nothing helped. He just couldn't visualize it and he was terrified. I never insisted that he had to go, but I kept trying hard to encourage him to go, trying to help him understand what it would be like and that he would be safe and have fun. He would hear none of it. He kept begging to watch TV, play on computer, or play with my phone. I wouldn't let him have any of those things if he refused to go to swim lessons. That brought him to full blown meltdown. Not quite the nuclear variety I had seen in recent weeks, but a meltdown nonetheless.
And as tends to happen, Boo's meltdown brought on one of my own. He flung his body at me, pushing, swinging, hitting, kicking my body and shrieking high pitched sounds. I removed myself from his clinging limbs, which is no small feat, and walked to another room. I picked up my phone and started typing out a text to my mom. I wasn't three words into it before I couldn't see the screen for my tears. "I f*ing hate this Mom. I hate autism and I hate the agony and anxiety it puts my kid in. He shouldn't have to fight so hard to just BE. It's so damn unfair. I just want to rage but there's nowhere to direct it."
And even as I typed it, I felt like I was betraying my child and the entire autism community. I thought of all the blog posts and facebook comment threads I've read about how people would never dream of taking autism away from their child if such a thing were possible. And I know that its so much a part of who he is, and that I need to love and honor and celebrate it as such. But there are times, there are days, when if I'm being really brutally honest...with myself as well as with all of you...I have to admit that my real feelings are more along the lines of "autism can kiss my a**." And I have vowed to be honest here. Not that I'll tell you everything, but that I will keep it real. I won't gloss over the hard stuff, nor will I sensationalize it. Because the only way we can move others from pity or intolerance to understanding, is to be real. Because as my husband always reminds me, "it is what it is." There is no need to try to excuse or qualify anything. It just is what it is.
So today, yeah, autism sucks and I hate it. Not because it is hard for me, though it can be. Not because I have trouble getting Boo to do what he needs to do, though I can. Not because I have to adjust my hopes and dreams for my son to reflect both his strengths and his limitations, though I do. I hate autism because it makes it so damn hard for my son to just BE. I hate watching him fight his anxiety. I hate watching him writhe and rage when he can't stand the feeling of being in his own skin. I hate watching him try so hard over and over to be sociable with his peers only to be met with blank stares when they don't know what the hell he's talking about. I hate watching him instantly transform from joyfully blissful to terrified when assaulted by a sudden strange loud noise. I hate hearing him beg through tears "I just wanna go home" when he is home. Just as any parent, I hate seeing my child in pain.
And to be fair, there are ever so many more things that I love about his autism, and the person it makes him. But those just aren't making the highlight reel today. And that's OK. Those will appear in another post on another day, and hopefully it balances out overall. Because I promise you I don't always feel this way. But for now...it is what it is.
Wednesday, June 13, 2012
Pay No Attention to the Mother Behind the Blog
People in my "real life" and even some from online are apt to compliment me often on my parenting. They tell me what a great mom I am, what a great job I'm doing with Boo, how lucky he is to have me. At times, I've actually felt quite exasperated with his special ed team for telling me that I am already doing everything they would recommend, because that doesn't give me any new tools with which to work. It's nice to hear, but not practically helpful. I try to always accept such praises humbly and graciously but not to let it go to my head. But I am human, and apt to get a swelled ego at times. Especially when my efforts with Boo are particularly effective. When I am able to calm the tempest, solve the sensory puzzle, or impart understanding of a new concept I am liable to swell up a bit and pat myself on the back. But there is one small person with a big influence in my life who knows how to swiftly and effectively bring me off my high horse and put me in my place.
I have found myself sitting on the dining room floor bawling while Boo rages and writhes nearby, the popcorn strewn about that he spilled and refuses to help pick up seeming to mock me. I have found myself sitting on the bedroom floor while Boo sits naked beside me screaming, unwilling or unable to choose between the new swimming trunks with the drawstring he can't stand and a pair of regular shorts, but terrified that the friends waiting for him to join them in the backyard will give up and leave. I have found myself sitting in the living room bawling as Boo writhes in pain, refusing all attempts at comforting him, refusing to allow any of the things I assure him will alleviate the hurt. I have found myself sitting on the front porch bawling as he howls and screams in the front yard, giving the neighbors a dramatic display of what the ugly side of autism can sometimes look like. I have found myself sitting in the car in front of the local convenience store, my fifty pound five year old having a full-on tantrum in the back seat, then clambering into my lap and proceeding to beat me up and scream as though he were the one being attacked. I have watched the scornful, shocked, judgmental, and pitying glances from onlookers as I tried in vain to bring my child back to a state of self-control.
It is times like those when little Toto pulls back the curtain and reveals the faltering, stammering, feeble human behind the smoke and mirror show that was the Great and Powerful Oz. I feel like a fraud. Like a sham. Like I have no business writing this blog, or talking about autism as if I have any clue what the hell I'm doing. I feel stupid, ineffectual, impotent. I have no idea what I'm doing most of the time. It's all by the seat of my pants. I try to make it all look good on the outside, but on the inside I constantly feel like I'm screwing it all up. I don't understand him. I don't know what he needs. I don't understand how he feels. I can't even get him to do something so simple as to pick up some flipping popcorn he spilled on the floor. I feel like I'm failing my boy. My cherished, wonderful, beautiful little boy, to whom I would give anything in this world that could help him mitigate these challenges, if only I had it to give.
When he begs me to help him "figure out what to do" I ache inside, wishing I had the power he believes I do. And all I can do is hope, pray, and believe that all the tools he needs to help him successfully navigate this world are things he already possesses. I hope that, like the Wizard, I can help him find and use the tools he already has, and show him how to get where he wants to go.
Friday, June 8, 2012
Anniversaries, Cupcakes, Finances, and...Oh Yeah! Ryan Friday!
Overall, it's been a good week for us. Sunday happened to be the thirteen year anniversary of Boo's Dad and Boo's Mom saying I Do. :D We didn't do anything particularly special, although I did decide to order a pizza for supper so I wouldn't have to cook or clean up. The city in which we live has an event once a year called City Wide Clean-up. This is a week where you can put virtually anything at the curb and the city will pick it up and dispose of it for you. It is a big help for people like us who don't have a truck to haul large items to the dump. The only thing you can't get rid of is lawn/garden stuff like tree limbs. Inspired by this event, we decided to do something we've been putting off for a long time. We removed the nasty, stained, ancient blue shag carpeting from Boo's playroom. Thankfully, there was linoleum tiles underneath, so we don't have to be in any hurry getting the replacement carpet installed.
Later that afternoon, we took Boo outside to play with his new "pipes," an idea inspired by a fellow mommy blogger.
Monday was uneventful save for the hour that Boo and I spent on Skype with my BFF and her two children. Her daughter is the same age as Boo, and they just love making faces and showing each other their favorite toys.
Tuesday was a good day. I spent the afternoon baking cupcakes. I had a new awesome-sounding recipe I wanted to try for the family bbq. In the evening Boo asked to go to the park with the red slide. We spent a long time there, and he amazed me by climbing higher than ever before on all the playground equipment. He has always been afraid to go high in the past. Go Boo!
Wednesday was the rough day for me. It started pleasantly enough. I sat down at the table and balanced the checkbook and paid bills. Paying bills always makes my skin crawl. Without giving too much personal detail, I can tell you that it was disheartening. About an hour later, I received an email from an attorney whom we had hired last October to help us out with something. We'd had to borrow money from a family member for the retainer fee and in the end, the attorney fees exceeded that amount by several hundred dollars. We have still not been able to the remaining balance. The email was stating that the attorney was ready to file a suit against us for our failure to pay. I was able to make arrangements with him to make very small payments to keep it out of court, but the whole issue really opened my eyes. There are several family members we owe money to for personal loans and several creditors we owe also. We are not making any headway financially. My husband's new job is great, but we are barely keeping our heads above water. I had to pull my head out of the sand and face the fact that I must go back to work again. It cut me to my core. As much as it can drive me nuts some days being here at home with Boo, it is the most wonderful and rewarding thing I have ever had the privilege of doing. Giving it up feels like ripping the heart out of my chest. I spent a great deal of time crying.
Later, after I had discussed it with my mom and my husband and was feeling better, I set about making the frosting and finishing the cupcakes. It made me feel good to create something yummy and beautiful. The bbq itself helped too. It was so relaxing and fun to hang out with my family and to allow Boo to run around and play and wear himself out at Grandpa's house.
Thursday was wonderful too, as my mom came to visit for the afternoon. I hadn't spent time with her in so long! We had a blast, played, acted silly, and I helped her with some issues she was having with her computer. Boo was totally thrilled to have her here as well. I gave her one of the cupcakes to try and she was over the moon. She kept asking how much I could sell them for. I still have no idea. How much would you pay for one of these yummy pretties?
Monday was uneventful save for the hour that Boo and I spent on Skype with my BFF and her two children. Her daughter is the same age as Boo, and they just love making faces and showing each other their favorite toys.
Tuesday was a good day. I spent the afternoon baking cupcakes. I had a new awesome-sounding recipe I wanted to try for the family bbq. In the evening Boo asked to go to the park with the red slide. We spent a long time there, and he amazed me by climbing higher than ever before on all the playground equipment. He has always been afraid to go high in the past. Go Boo!
Wednesday was the rough day for me. It started pleasantly enough. I sat down at the table and balanced the checkbook and paid bills. Paying bills always makes my skin crawl. Without giving too much personal detail, I can tell you that it was disheartening. About an hour later, I received an email from an attorney whom we had hired last October to help us out with something. We'd had to borrow money from a family member for the retainer fee and in the end, the attorney fees exceeded that amount by several hundred dollars. We have still not been able to the remaining balance. The email was stating that the attorney was ready to file a suit against us for our failure to pay. I was able to make arrangements with him to make very small payments to keep it out of court, but the whole issue really opened my eyes. There are several family members we owe money to for personal loans and several creditors we owe also. We are not making any headway financially. My husband's new job is great, but we are barely keeping our heads above water. I had to pull my head out of the sand and face the fact that I must go back to work again. It cut me to my core. As much as it can drive me nuts some days being here at home with Boo, it is the most wonderful and rewarding thing I have ever had the privilege of doing. Giving it up feels like ripping the heart out of my chest. I spent a great deal of time crying.
Later, after I had discussed it with my mom and my husband and was feeling better, I set about making the frosting and finishing the cupcakes. It made me feel good to create something yummy and beautiful. The bbq itself helped too. It was so relaxing and fun to hang out with my family and to allow Boo to run around and play and wear himself out at Grandpa's house.
Thursday was wonderful too, as my mom came to visit for the afternoon. I hadn't spent time with her in so long! We had a blast, played, acted silly, and I helped her with some issues she was having with her computer. Boo was totally thrilled to have her here as well. I gave her one of the cupcakes to try and she was over the moon. She kept asking how much I could sell them for. I still have no idea. How much would you pay for one of these yummy pretties?
Cherry Limeade Cupcakes
And now, we have arrived at Friday. And you know what that means! Yep, it's "Special Needs Ryan Gosling" time! For more fabulous Ryan fun, click on the button at the bottom of this post and see all the other fabulous bloggers who are joining in. For my part, here's what Ryan had to say to me this week:
Oh Ryan, thank you. I just needed a big strong shoulder.
Why Ryan, you're making me blush!
You just never get enough, do you?
Click here to see all the other Ryans.
Have a great weekend everyone!
Monday, June 4, 2012
Boo is Weird
Yesterday afternoon Boo was starting to get restless and unhappy, so I suggested that we go to the park. He was elated by this idea. He said he didn't want to go to the park with the red slide (two blocks from home) but rather the one with the blue slide (other side of town...which in my town means about a three minute drive.) This was fine with me, as I prefer the park with the blue slide anyway. So we loaded up and headed out. But as I neared the park I cringed. The park with the blue slide is along side of the community building, which townspeople can rent for events. There were cars everywhere. Clearly the community building was rented for the day. The park was crawling with people.
We pulled up in front and I parked the car. I stared into the park. There were children everywhere. Boo saw them too, but he was elated. I was worried. I looked at the community building and there was a large banner draped on it announcing a family reunion. I cursed silently in my head. I surveyed the scene. I was weighing the possible outcomes of leaving vs staying and invading this family reunion. I decided that the latter was the lessor of two struggles and we exited the car.
Boo ran happily over to the blue slide, climbed up, and started chattering at the kids. I took a seat at a nearby picnic table under a shade tree, eyes and ears on high alert. I heard him at the top of the slide announcing "It's your friendly neighborhood Spiderman!" and I chuckled. But immediately after that, I noticed a confrontation taking place between Boo and an older boy. The boys face was contorted with some emotion I couldn't quite name. I was trying to figure out what was going on and at what point I should intervene. Boo was trying to avoid the boy, but the boy was following him, hounding him. I saw them put hands on one another's chests, but never in an overtly aggressive manor. Boo kept disengaging from the boy and going back to the other children, but whenever he would speak to them, the boy would get in his face again. Boo was trying to push him away, but the boy would take that as an aggressive move and put hands on Boo. I was incredulous, looking around the park for this child's parents. A moment later, I saw Boo walking away from the slide area, down the walking path which winds around the park. The boy was following closely behind, taunting him.
"Spiderman is STUPID!"
"NO he's NOT!"
"Yes he is. Spiderman is STUPID and all kids who like him are WEIRD!"
Ok, this is enough. Just as I made the decision that it was time to step in and stop this bully, they both put hands on one another and the real shoving match began. I barked at them, a loud and terse "HEY" that was heard across the park. The boy's head shot in my direction and he took off, ran to another nearby picnic table area. He was still close enough to hear everything I was saying. I addressed first things first.
"Boo, you can not put your hands on other kids like that. If there is a problem, you get an adult to help."
"But mom, that kid said that Spiderman is stupid."
"I know. And that kid can think whatever he wants. That's just his opinion. We like Spiderman and that's just fine."
The boy's attention was rapt. He was taking in everything that I was saying, he was staring at me. I suggested that Boo just ignore that boy and not talk to him or play with him. I said "He's being mean to you honey. He doesn't want to play or be friends. He just wants to be mean and hurt your feelings. I think you should just leave him alone, ok?" I wasn't sure how much of that Boo took in, because he was acting very distracted. But he took off and started making laps back and forth along the walking path.
I sat there so incensed I was practically vibrating. I looked around the playground at all the children of various ages. My mind was racing. This is a snapshot of a school yard. This is what my son is up against. He's going to be bullied. Everything I've feared is playing itself out. Oh my god, how can I protect my baby? After a while, Boo decided to re-join the children clustered on and around the slide. A few minutes later, he was lingering on the opposite side of the slide where I couldn't see him. I got up and peeked around. He and the boy were sitting side by side on the large PVC pipe that surrounds the slide area. I tensed. But their postures were relaxed, their voices low. Soon, Boo stood up with a huge smile on his face and ran toward me shouting happily "He's not going to be mean to me anymore, Mom. Yeah, he's sorry he did that, and I forgave him." I exhaled in relief, realizing that I'd been holding my breath.
The children all continued playing together. I downgraded myself from red alert to orange. I picked up my phone and started a game of solitaire. There was another boy there who had caught my attention. He was gangly and cute. He wore glasses and a buzzed haircut. He was trying to assemble some sort of club amongst the children. The others agreed to join, but when he tried to assemble a "meeting" it quickly fell into chaos, due in part to Boo's incessant chatter and insistence on being the center of everyone's attention. The boy in glasses tried multiple times over the next hour or so to assemble his "meeting" with similar results.
I had relaxed even more in that time. Boo was playing happily, if oddly, with the children. They were tolerating him in an amused, sometimes confused, fashion. I was sitting at a picnic table in the shade enjoying the afternoon. The boy with glasses walked up to me and stated matter-of-factly "Boo is weird." My heart flew into my throat. Crap, crap, CRAP! I thought to myself. My mind raced. He doesn't blend. He doesn't fit in. The gap between him and his peers is getting bigger, not smaller. What if it becomes a chasm? What if he can't overcome it? What if he can't manage meaningful friendships? What if he's always thought of as the weird kid? What if...what if...what if...
I pulled myself together and calmly asked the boy with glasses "what makes you say that about him?"
"Well, he says weird stuff. And when we ask him something he says stuff that's not even words."
"What is your name?"
"Mick."
"How old are you, Mick?"
"Nine."
"Well Mick, have you ever heard of something called autism?"
"Um, yeah. I mean I've heard that word, but I don't know what it is."
"Well autism means that someone's brain works in an unusual way. Boo has autism, so his brain works differently than yours. He thinks differently and sometimes acts differently. But that's ok, because he's just a kid who wants to play and have fun, just like you. He just wants to be your friend. Also, he's only five, so he's not as mature as you are since you're nine."
Mick took it in stride and didn't ask any questions. He sat down at the table with me and struck up a conversation, asking me if I liked animals. As we chatted, he rattled off an astounding number of facts about a large variety of animals. He spoke in large chunks of what I recognized as "scripts," probably from a book or books. I began to wonder if autism was a word he had heard for a reason. We chatted at length and he pulled me in. He charmed me and wrapped me around his little finger just as I've seen Boo do with adults a hundred times. I got quite an education also. We spoke at length and eventually we were joined by the first boy, the one who thought Spiderman is stupid. I learned that his name was Nate. As it turned out, he was a pleasant boy, if a little intense. Eventually, the conversation wound itself up and the kids moved on.
Boo asked me to push him in the big swing. It's a large swing designed to facilitate kids with disabilities who can't hold themselves up in a regular swing, but it's very popular with kids of all abilities. When he decided he was done swinging, instead of just getting out he made a game of it. He called out to Mick. Mick and Nate came over, along with a few other kids. Boo told them "I made a code for you. If you can crack the code you can get me out of here." (A variation of the Jack Bowser game on PBSkids.org) They immediately began blurting out possible 'code words' they thought might work, like "Spiderman!" But that wasn't the kind of code Boo had in mind. He was acting out a "script" from a video game. He launched into a long rambling explanation of how it was to work. He was going to pose a number of questions to the other kids and they had a number of chances to get a number of correct answers in order to win the right to free him from the swing. The numbers and the details were being constantly changed as the explanation went on. Boo would repeatedly back up, start over, change parts, add rules, and generally make what was essentially a simple quiz game sound like the most complicated ordeal in the world. The kids were gathered around him in a circle, and I watched them continually exchange questioning glances with one another.
Finally, Boo got around to posing the first question. "How tall is a giraffe?"
Mick asked him, "Do you know the answer?" Boo replied that he did not, and all the kids laughed. Mick inquired "How will you know if we answer it correctly if you don't know the answer?" Not understanding Mick's question, Boo simply moved on to the next item. I don't remember what he asked, but it was also something that he himself didn't know the answer to. Mick posed the same challenge, and again, all the children laughed.
I looked at Mick. "Do you remember autism? He's trying to make this game be like a game he plays on the computer. That's one of the things he likes to do that seems a little funny to other people. But he just wants to play with you." Mick nodded, and he and the other boys answered the next several of Boo's questions and managed to 'free' him from the swing.
They ran around playing for a while, and then Mick again tried to organize his animal club meeting. I agreed to attend. Boo was happy to go as well, but was trying to run it and make people listen to one of his own soliloquies. I called him over to me and explained that what Mick wanted to do for the meeting was for us to listen to him tell us all about polar bears. Boo sat quietly, and Mick began his speech. He was repeating the information he'd told me earlier verbatim. Yep, scripting. I was starting to love this kid. He stood atop a picnic table, trying hard to recall enough facts to qualify as a speech. Boo was quickly uninterested, but I made it a point to give Mick my rapt attention. Nate was serving as 'secretary' of the club. As near as I could tell, the duties of that position included sitting on the table next to Mick and occasionally whispering more facts in his ear when his speech got stuck. (This was clearly a conversation that had been ongoing between them for some time) Eventually the meeting was dismissed.
At that point, we had been in the park for about two hours and it was time to leave. To abbreviate the end of this little tale, let's just say I had to haul Boo away kicking and screaming. He did NOT want to leave the other kids. It took a while for Boo to settle and his meltdown to subside. It took even longer for me to wrap my mind and heart around all that had happened. It was clear to me that it was possible for Boo to be successful in a social setting with his peers, but that it was not going to happen without support. I am certain that if I had not been paying close attention, it would have been ugly. And had I not been watching closely enough to see the beginning of the problem, he would have simply been in trouble for fighting and it would have left him confused and frustrated.
It was clear that not only do we need to work on giving Boo the tools he needs to navigate social interaction, but we also have to work just as hard giving his peers the knowledge and education they need in order to be understanding and compassionate. His classmates need to be taught about his differences. It's clear to me that he is not going to "blend" as well as I had hoped. I will have to do some work to figure out the best means of accomplishing that, and I am confident that the kindergarten teacher will be receptive and helpful in that effort. It was a hard pill to swallow, but it's important to face.
We pulled up in front and I parked the car. I stared into the park. There were children everywhere. Boo saw them too, but he was elated. I was worried. I looked at the community building and there was a large banner draped on it announcing a family reunion. I cursed silently in my head. I surveyed the scene. I was weighing the possible outcomes of leaving vs staying and invading this family reunion. I decided that the latter was the lessor of two struggles and we exited the car.
Boo ran happily over to the blue slide, climbed up, and started chattering at the kids. I took a seat at a nearby picnic table under a shade tree, eyes and ears on high alert. I heard him at the top of the slide announcing "It's your friendly neighborhood Spiderman!" and I chuckled. But immediately after that, I noticed a confrontation taking place between Boo and an older boy. The boys face was contorted with some emotion I couldn't quite name. I was trying to figure out what was going on and at what point I should intervene. Boo was trying to avoid the boy, but the boy was following him, hounding him. I saw them put hands on one another's chests, but never in an overtly aggressive manor. Boo kept disengaging from the boy and going back to the other children, but whenever he would speak to them, the boy would get in his face again. Boo was trying to push him away, but the boy would take that as an aggressive move and put hands on Boo. I was incredulous, looking around the park for this child's parents. A moment later, I saw Boo walking away from the slide area, down the walking path which winds around the park. The boy was following closely behind, taunting him.
"Spiderman is STUPID!"
"NO he's NOT!"
"Yes he is. Spiderman is STUPID and all kids who like him are WEIRD!"
Ok, this is enough. Just as I made the decision that it was time to step in and stop this bully, they both put hands on one another and the real shoving match began. I barked at them, a loud and terse "HEY" that was heard across the park. The boy's head shot in my direction and he took off, ran to another nearby picnic table area. He was still close enough to hear everything I was saying. I addressed first things first.
"Boo, you can not put your hands on other kids like that. If there is a problem, you get an adult to help."
"But mom, that kid said that Spiderman is stupid."
"I know. And that kid can think whatever he wants. That's just his opinion. We like Spiderman and that's just fine."
The boy's attention was rapt. He was taking in everything that I was saying, he was staring at me. I suggested that Boo just ignore that boy and not talk to him or play with him. I said "He's being mean to you honey. He doesn't want to play or be friends. He just wants to be mean and hurt your feelings. I think you should just leave him alone, ok?" I wasn't sure how much of that Boo took in, because he was acting very distracted. But he took off and started making laps back and forth along the walking path.
I sat there so incensed I was practically vibrating. I looked around the playground at all the children of various ages. My mind was racing. This is a snapshot of a school yard. This is what my son is up against. He's going to be bullied. Everything I've feared is playing itself out. Oh my god, how can I protect my baby? After a while, Boo decided to re-join the children clustered on and around the slide. A few minutes later, he was lingering on the opposite side of the slide where I couldn't see him. I got up and peeked around. He and the boy were sitting side by side on the large PVC pipe that surrounds the slide area. I tensed. But their postures were relaxed, their voices low. Soon, Boo stood up with a huge smile on his face and ran toward me shouting happily "He's not going to be mean to me anymore, Mom. Yeah, he's sorry he did that, and I forgave him." I exhaled in relief, realizing that I'd been holding my breath.
The children all continued playing together. I downgraded myself from red alert to orange. I picked up my phone and started a game of solitaire. There was another boy there who had caught my attention. He was gangly and cute. He wore glasses and a buzzed haircut. He was trying to assemble some sort of club amongst the children. The others agreed to join, but when he tried to assemble a "meeting" it quickly fell into chaos, due in part to Boo's incessant chatter and insistence on being the center of everyone's attention. The boy in glasses tried multiple times over the next hour or so to assemble his "meeting" with similar results.
I had relaxed even more in that time. Boo was playing happily, if oddly, with the children. They were tolerating him in an amused, sometimes confused, fashion. I was sitting at a picnic table in the shade enjoying the afternoon. The boy with glasses walked up to me and stated matter-of-factly "Boo is weird." My heart flew into my throat. Crap, crap, CRAP! I thought to myself. My mind raced. He doesn't blend. He doesn't fit in. The gap between him and his peers is getting bigger, not smaller. What if it becomes a chasm? What if he can't overcome it? What if he can't manage meaningful friendships? What if he's always thought of as the weird kid? What if...what if...what if...
I pulled myself together and calmly asked the boy with glasses "what makes you say that about him?"
"Well, he says weird stuff. And when we ask him something he says stuff that's not even words."
"What is your name?"
"Mick."
"How old are you, Mick?"
"Nine."
"Well Mick, have you ever heard of something called autism?"
"Um, yeah. I mean I've heard that word, but I don't know what it is."
"Well autism means that someone's brain works in an unusual way. Boo has autism, so his brain works differently than yours. He thinks differently and sometimes acts differently. But that's ok, because he's just a kid who wants to play and have fun, just like you. He just wants to be your friend. Also, he's only five, so he's not as mature as you are since you're nine."
Mick took it in stride and didn't ask any questions. He sat down at the table with me and struck up a conversation, asking me if I liked animals. As we chatted, he rattled off an astounding number of facts about a large variety of animals. He spoke in large chunks of what I recognized as "scripts," probably from a book or books. I began to wonder if autism was a word he had heard for a reason. We chatted at length and he pulled me in. He charmed me and wrapped me around his little finger just as I've seen Boo do with adults a hundred times. I got quite an education also. We spoke at length and eventually we were joined by the first boy, the one who thought Spiderman is stupid. I learned that his name was Nate. As it turned out, he was a pleasant boy, if a little intense. Eventually, the conversation wound itself up and the kids moved on.
Boo asked me to push him in the big swing. It's a large swing designed to facilitate kids with disabilities who can't hold themselves up in a regular swing, but it's very popular with kids of all abilities. When he decided he was done swinging, instead of just getting out he made a game of it. He called out to Mick. Mick and Nate came over, along with a few other kids. Boo told them "I made a code for you. If you can crack the code you can get me out of here." (A variation of the Jack Bowser game on PBSkids.org) They immediately began blurting out possible 'code words' they thought might work, like "Spiderman!" But that wasn't the kind of code Boo had in mind. He was acting out a "script" from a video game. He launched into a long rambling explanation of how it was to work. He was going to pose a number of questions to the other kids and they had a number of chances to get a number of correct answers in order to win the right to free him from the swing. The numbers and the details were being constantly changed as the explanation went on. Boo would repeatedly back up, start over, change parts, add rules, and generally make what was essentially a simple quiz game sound like the most complicated ordeal in the world. The kids were gathered around him in a circle, and I watched them continually exchange questioning glances with one another.
Finally, Boo got around to posing the first question. "How tall is a giraffe?"
Mick asked him, "Do you know the answer?" Boo replied that he did not, and all the kids laughed. Mick inquired "How will you know if we answer it correctly if you don't know the answer?" Not understanding Mick's question, Boo simply moved on to the next item. I don't remember what he asked, but it was also something that he himself didn't know the answer to. Mick posed the same challenge, and again, all the children laughed.
I looked at Mick. "Do you remember autism? He's trying to make this game be like a game he plays on the computer. That's one of the things he likes to do that seems a little funny to other people. But he just wants to play with you." Mick nodded, and he and the other boys answered the next several of Boo's questions and managed to 'free' him from the swing.
They ran around playing for a while, and then Mick again tried to organize his animal club meeting. I agreed to attend. Boo was happy to go as well, but was trying to run it and make people listen to one of his own soliloquies. I called him over to me and explained that what Mick wanted to do for the meeting was for us to listen to him tell us all about polar bears. Boo sat quietly, and Mick began his speech. He was repeating the information he'd told me earlier verbatim. Yep, scripting. I was starting to love this kid. He stood atop a picnic table, trying hard to recall enough facts to qualify as a speech. Boo was quickly uninterested, but I made it a point to give Mick my rapt attention. Nate was serving as 'secretary' of the club. As near as I could tell, the duties of that position included sitting on the table next to Mick and occasionally whispering more facts in his ear when his speech got stuck. (This was clearly a conversation that had been ongoing between them for some time) Eventually the meeting was dismissed.
At that point, we had been in the park for about two hours and it was time to leave. To abbreviate the end of this little tale, let's just say I had to haul Boo away kicking and screaming. He did NOT want to leave the other kids. It took a while for Boo to settle and his meltdown to subside. It took even longer for me to wrap my mind and heart around all that had happened. It was clear to me that it was possible for Boo to be successful in a social setting with his peers, but that it was not going to happen without support. I am certain that if I had not been paying close attention, it would have been ugly. And had I not been watching closely enough to see the beginning of the problem, he would have simply been in trouble for fighting and it would have left him confused and frustrated.
It was clear that not only do we need to work on giving Boo the tools he needs to navigate social interaction, but we also have to work just as hard giving his peers the knowledge and education they need in order to be understanding and compassionate. His classmates need to be taught about his differences. It's clear to me that he is not going to "blend" as well as I had hoped. I will have to do some work to figure out the best means of accomplishing that, and I am confident that the kindergarten teacher will be receptive and helpful in that effort. It was a hard pill to swallow, but it's important to face.
Friday, June 1, 2012
Puzzle Solver
We had read our books, said our goodnights, and hugged each other. He was laying with his back to me, still and quiet. His breathing was smooth and even. I had just decided it was safe to get up and leave the room. Suddenly, he rolled over and looked at me with the most satisfied expression on his face. He thrust his hand toward me, his middle fingers curled into his palm and announced, "He must have a hole in his wrist so his webbing can come out when he shoots it when he's wearing his costume!"
Yes, my love. You have figured it out. Now rest your lovely brain my darling. There are plenty more puzzles awaiting you tomorrow. I adore the way your little mind works!
Yes, my love. You have figured it out. Now rest your lovely brain my darling. There are plenty more puzzles awaiting you tomorrow. I adore the way your little mind works!
Hey Girl, it's Friday!
It's the end of another long week. My husband was away for three days at the beginning of the week. Wednesday evening was difficult. Thursday was wonderful. Today we have to make a trip to Walmart, which could go either way. But this evening my husband and I are supposed to go to a banquet for his job. An evening with adults and free food, I can't wait! Let's hope they don't decide to dispatch him for early morning tomorrow, because if they do he will have to stay home and go to bed early instead. But if they do, at least I can comfort myself with a chat with my old pal Ryan. Check him out below, then head on over to Advntures in Extreme Parenthood and check out some more of him. And have a great weekend!
Oh Ryan, you just can't get enough can you? Silly man.
Keep trying Ryan, someday we'll get there.
Oh, Ryan, stop! She meant well. I'll just have to work harder to educate her.
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