Saturday, January 8, 2011

The darker and lighter side to Autism Humor

I was explaining to my husband that I was working with Justin, our almost seven year old on when it's appropriate to tell a "white lie". This is a topic that's very difficult for many children with Aspergers. Because their thinking is based in truth and logic. When I brought up the topic with Justin he looked perplexed and asked what "white lie" was. So, I asked him why he shouldn't call someone "fat". He paused and was concentrating and finally said, "because they would be embarrassed". HUGE for him to cognitively process that although I was spoon feeding the conversation. I didn't get into what it meant to be polite, or how inappropriate it would be to call someone that etc etc and I thought it was great that he was perspective taking.

When I reassured him that yes, a person would be embarrassed if you called them "fat", we also had to talk about the unpleasant fact that the person may in fact, be heavy set, which is a fact, or a truth, and why we still don't go around pointing out people's weight and calling attention to it in in-appropriate ways. I did this partly because when I saw Michelle Garcia-Winner, renown speech and language pathologist (SLP) for kids on the autism spectrum she discussed how she teaches her kids to be able to lie, that people do lie, and when it is and is not appropriate in our society. Think about it. The differentiation comes so easily to the neurotypical person but is merely a scientific theory to the child with Aspergers that they have to study, learn and work through one situation at a time!

After bringing all of this to Justin's attention, he immediately said, "Mama. We still CANNOT lie to water resorts!!" This, he was very adamant about. He was referring to the instance of sitting in a hot tub at a water resort where the signage clearly states that no one under six is allowed in the hot tub. To my son's dismay, my husband allowed my almost five year old--my 49" 50 lb four year old--in the hot tub with him. Justin further stated that, "Connor can wait the extra year until he's six and that we must do something to address this." Serious as a funeral.

So, I am rehashing all of this to my husband thinking about the hysterical nature of the whole situation--too tired to process through my son's inability to cognitively process through daily happenings--and my husband tells me, "That's nothing, in the hot tub, Connor told me that I was a fat old man with breasts." Cue snare drum and crashing high-hat.

Monday, December 20, 2010

'Twas The Nightmare Before Christmas...

I knew it was probably not a good idea to take Connor to the Christmas Choir at the church, but he had been doing well lately so I thought I would try. So we drove to my aunt and uncle's house. He had been there lots of times before. But this time was different. He was very quiet. And by very quiet, I mean did not speak unless spoken to. Looking back, that should have been my first clue that something somewhere was wrong.

We drove to the church when it was time and it was a beautiful drive. Gorgeous homes, turning into city landscapes and then we were there. There were other people there too, but the main door was locked. A church door locked on a Sunday of a performance? My second clue. Perhaps God was trying to tell me something...or Buddha, or someone in the universe and I just wasn't tuned in. It was cold out there! But finally someone did come to the door and let us in. What a gorgeous church. The stained glass was more ornate and beautiful than any I had seen in a while. Not just pictures, but an entire decoration of shapes and a gorgeous blue was definately the pigment of choice throughout the structure. It was amazing and I thought for sure that Connor would bee blown away by it as well. Not so much.

He picked up a hymnal and asked me to read to him. I explained the words were lyrics and that the notes were another language--musical language. So while I sane songs like Frosty the Snowman and Jingle Bells, he followed along in the book with his fingers on the notes slowly progressing downward as I sang...until something snapped and I felt the first punch in my leg. "Where are they? They are NOT coming out" he said, accusing me my lying--in church no less. "In a few minutes honey"..."Do you want to call daddy" I said as I reached for my phone and all I got was more leg pain as he continued to punch...and in my own head I already had started to prepare our escape route if necessary. I started planning on my drive to the church for that matter but I had to get there, view the layout, to be more specific in my planning. My hypervigilence and military training were not all for naught.

Finally, they started walking out and we saw my aunt. She waved to Connor and I thought I was in the clear. Until, they walked past the area where I had told Connor they would be and continued walking into the aisles on either side of the pews instead. Now, I KNEW I was in trouble. The expectation was smashed beyond recognition, and there was already the buildup of aggression. As the singers filled the aisles, smiling with music in hand, I felt, but did not see, the first hit to my face. And it hurt. There were a second and a third, but they came in the midst of my planning and executing our exit strategy so I never flinched although the pain was excruciating. Did I have time to think about whether or not my nose was broken, not really. I was focused. And I was focused on getting my child out of that sensory overload of beautiful voices and acoustics of "Come All Ye Faithful" in the midst of the ugliness and cruelty of autism. I said to my cousin, "I have to get him out of here" and grabbed Connor who was at the point, screaming, "This is STUPID" or something like that. I managed to pick him up, all 50 pounds of my four year old and as I made my way down the aisle, the singers parted, mostly dressed in black and I couldn't have told you if they looked sad, understanding, angry or thought I was rude as I made my way, in what seemed like forever through that music filled church to the doors and then outside to the safety of the cold.

How cruel a joke that the same beautiful Christmas choir music might have well been pure evil driving my child's brain insane to the point of no return. That walking into the cold winter air of quiet, in amidst the traffic, stopped the violence. Every day I work tirelessly, researching, spreading awareness, calling doctors, talking to the schools, pour my life into making my son's life better, and that day, was nothing short of a nightmare before Christmas in the real sense of the phrase. It was like someone tapping me on the shoulder to remind me of the extent of what I am dealing with. Well, it worked because I am officially back in reality.

Saturday, October 23, 2010

What does BLANK equal?

I recently found the most amazing holistic chiropractors. An amazing husband and wife team who work with adults, children and families including children on the autistic spectrum. I had heard a lot of great things about them from friends at Roots in Leominster. But, I kept putting off making an appointment. Lately, I can't even look at the amount of money spent on copays, meds and holistic (and very necessary) interventions. And then, there's the time and logistics involved in getting to all of these appointments. With two boys on the spectrum--neither of which has a shortage of medical issues, it seems, I'm very busy organizing it all.

I've been working on making peace with all of this and the many layers involved. Some days I'm "there"...proud of my accomplishments, or the boys' progress. And other days are very different. They are dark filled days of anger, resentment, frustration or guilt. Friends and family of neurotypical children--or that don't have children, tell me I'm a great advocate for my children...that they will succeed because of me. Maybe. I'm my own worst enemy at times, perseverating on all of the information I can gobble whenever my keyboard or IPad are within reach! I love information in general and feel it's essential to dealing with autism.

But, it's the same love of the information and ability to "sort large amounts of it and synthesize it" that makes me aware of something else. That, maybe all of these things I am doing are going to make all the difference in the world for my children. Maybe they will have friends, girlfriends, get jobs, be independent. I need to preface this by saying that I am not a pessimist or an optimist. There, I said it. I--since high school--consider myself to be a realist. Someone who, looks at all of the information in front of them and with a little intuition thrown in, makes a good faith judgement. Sure, information can change and you have to revisit the equation and make the proper adjustments, but it's how I function, good or bad.

ONE of the things that I do not like about autism--I chose not to write "hate", not sure why--is that there does not exist a specific "equation" to help my boys. That sentence makes sense to me but if it doesn't to you, I mean to say this: OT + positive reinforcement + good IEP meetings = BLANK.
Social Skills + eating clinic + different vaccination schedule = BLANK. What is the blank? Is it progress? Is it better behavior? Is it healing? And, is it long-term? Now I know that there are lots of people out there whose children have ranged from BLANK equaling "no change" all the way to BLANK equaling "healed"...whatever healed means for autism...but what will it mean for each of my boys? The suspense is killing me.

So, my husband and I chose to take the boys out of organized OT so my youngest and I could affors to see the holistic chiropractors who are producing amazing results. They found issues no other doctors were able to find in either my son or myself and are addressing those issues. I am excited to bring my older son there on Monday for an evaluation. But, now I have become an OT. I hope I can do my best with the boys--I have yoga balls, a small trampoline, weights games AND a prize box. I will try and put together an organized session for each son. And I will do my best.

Maybe the next neuropsychological evaluation will give my youngest a new label? He's been making progress. Maybe it will stay the same. None of that even makes sense to me. Autism is such a strange animal. Maybe there's also mental illness. Maybe there's not. Maybe food allergies. Or maybe just food sensitivities. Maybe there are significant physiological issues or maybe not. Some people say they have seen kids start out with the label of PDD-NOS who then graduate high school indistinguishable from their neurotypical peers. I want to know what the means. I know the literal interpretation. So, in that specific case, cumulative therapies applied + the neurological development + ???? = indistinguishable from neurotypical peers by 18 years of age. And yet for many, the first part of the equation might be the same, yet the result remains unchanged. And, although I have always been interested in psychology, sociology and helping others, I don't think I will ever make peace with this equation. Connor has been making progress with the chiropractor, and his constipation is lessening. Like they say in the Rocky Horror Picture Show, I am anxiously waiting to see what his "blank" equals with much antici-PATION.

Thursday, October 21, 2010

It's Hard to Remember I'm on His Side

I went to a talk the other night presented by Susan Senator, a mom who speaks and writes about autism and how it affects people's lives. There was a lot of great information shared, but one piece stood out for me in the moment. She was talking about how you can become so angry about a behavior that your child is presenting that in that moment, you can forget something so important. The behaviors are part of the disability. They are entrenched in the day to day life of autism parents, to very differing degrees. What she said that stood out for me was this: "When I am angry in that moment, I remind myself, I am on his side."

This was a very subtle yet extremely poignant AND potent concept for me. For parents of autism, it needs no further explanation. But I wanted to share a recent moment where it helped me reel myself back in. And honestly, being able to work on that skill with my boys made me feel like a million bucks and made me a more effective mother.

Last night, Connor was in my bed coughing. And by coughing, I mean "coughing"! Each time my husband and I tried to get him to drink some water, his reply was "NO!" Now, of course we wanted Connor to be comfortable. But we also wanted to sleep! This went on and on for hours. I was exhausted, aggravated that my child would not just take a sip of water! Wasn't he uncomfortable? I would ask if he was tired, but that is no longer a question I care to visit after 4.5 years of sleep issues. I could have yelled, I could have been grouchy. He was fighting us on a simple task like drinking water...the affects of which would make him more comfortable and would allow us all to sleep. Frustrating? Yes.

Instead, I was calm, and while I was up, going to the bathroom--awake so long I could no longer just lay in bed and fight the urge--Connor came up to me crying. He put his arms out for a hug--which is still such a new concept for him to initiate, I cherish each time it happens. I was able to hold him. To calm him. To get to him drink some juice (organic with little sugar!) and wipe his nose. His bloody nose. It was a long night. But, I kept thinking of that little phrase, "I am on his side." It carried me through. And in the end, Connor was comforted and went back to sleep. And I got to sleep with a clear and happy conscious. Not only I did I solve the issues at hand but I was able to do it in the caring, loving and nurturing way that I always want to--but cannot always achieve because Autism, so often, takes away my own abilities to be myself. But last night, I won out.

Wednesday, October 20, 2010

Eyes on Me!

I'm not sure why it was so upsetting because I had, I think, solved an ongoing problem. Justin almost never responds to his name being called. To say it caused stress at home is an understatement! I brought up the old problem yesterday during my home visit from the school. The school's Autism Specialist had suggested that maybe he should check in with Justin's teacher and see if she had any visual cues to get his attention. The visit went like all the others. We went over information and I processed it in a general way with little to no emotion. He's had the diagnosis for almost three years now, just another this morning I asked Justin, "Does your teacher ever say anything to get your attention?" He told me that when she wants to get the attention of the class, she says, "eyes on me!" I asked him if he could do it, too and he told me "yes".

So, I waited until his bright blue eyes were locked onto the new Dr. Seuss show on TV. Wait for it...wait for a direct tone, I stated, "eyes on me". And it worked!! Not only was Justin able to respond to me on the FIRST try, but it was during a preferred task...engaged in television! He even let a little smile escape when he realized what had just happened. I did too. I waited a few more minutes and tried it again. I made sure that he was in deep in his trance between his own thoughts and Dr. Seuss. "Eyes on me!" And it worked TWICE. I let it go. I didn't want to jinx myself or ruin the moment. I told him I was proud of him. He simply said, "Mom, I looked at you because I thought you were the teacher." And just like that, went back to waiting for the bus.

It was only after I was in the shower later this morning that I felt upset. Delayed social processing on my own part. My kid either can't or won't respond to his name most of the time and almost never on the first attempt. He'll be seven in February. He's brilliant. He's beautiful. And sensitive and compassionate (when his brain allows). But, I have to say, "eyes on me" to get him to engage me? Suddenly, I wasn't happy anymore and the re-realization that he has Aspergers Syndrome hit me like a warm, uncomfortable feeling that I couldn't get rid of. Most days, I am at peace with this realization and I work hard to make sure that Justin, is at peace, too.

But sometimes, some days, it almost seems like the little things, the nuances of the situation are what upset me most. My friends with neruotypical children might ask, "If he responds to that, why can't he just respond to his name?" Maybe they wouldn't. Either way, I can't explain it either.