Human-Kind

My son was not well at school yesterday.  When his teacher called to tell me he was feverish and sleeping in the quiet room, my heart sank.  It sank for him because yesterday was a day of the long awaited fulfillment of plans.  He was waiting for almost a year to go to a concert in Kingston with his support worker and friend, Lindsey, and the rest of the family was heading to Toronto to see a dress rehearsal at the National Ballet for my birthday. But that’s family life. Things are planned and plans change and we chalk it up to bad timing or bad luck or what have you. The James family day of artistic appreciation was taking a big hit.

My husband, eager not to disappoint (Tom is big on birthdays and hates to disappoint us) asked me to call around and see if (a) we could get Adam to a doctor to maybe have him quickly checked out (Adam is autistic so on the rare occasion when he is ill and it seems significant enough we like to get him checked out as he sometimes does not explain his symptoms properly) and (b) see if someone could stay with him while he rests in bed or (c) see if someone would go in his place and he would stay with Adam.  Willing to pull the plug on all of it (I am not big on making a fuss over my birthday and I am okay with disapointment), I compromised and called around to see what I could do.  The doctor said it sounded just like a cold was coming on or a flu and if he was the same the following morning to bring him in. Everyone else I called was going to this concert so I decided to fold and called his teacher to tell her Tom would pick up Adam from school and bring him home.

Well, wouldn’t you know it, Mr. Adam, now 18, insisted on coming home on his bus.  He absolutely did NOT want his father to pick him up from school. He was willing to take an Advil and come home on the bus AND he was going to the concert. I could hear him vehemently stating his case, so to avoid a lengthy argument, we let him come home on the bus. By the time he got home, he had a big speech all planned that involved telling us in every which way he was going to the concert.  He was not burning up, he had a bath and as per the doctor’s suggestion, I gave him a Tylenol to go along with the Advil he’d had a bit earlier. He was perked up. He dressed as per Logan’s style suggestions in a light t-shirt, with a bluish hoodie, a black boxy jacket and his grey joggers that Logan gave him for Christmas. He ate a sandwich as a snack and showed me he’d eaten all his lunch at school and he was listening to the band he was going to see through his headphones.  He was going and THAT WAS THAT.  When a child who has never really been able to decide much for himself looks you in the eye (a thing rarely done by autistic persons) and puts his foot down regarding his own life, you have to respect it.  I had to respect his judgement.  He is 18 and is finally able to do what we have been waiting on for so long which is for him to express himself in a clear and well thought out fashion.  Against all of my maternal instincts, I agreed with his father, brother and teacher and with Adam and he went to the concert and we went to our show. After all, I remember taking the Comtrex back in the day when being at the party was of utmost importance to me. It was not easy to get to go out when I was younger and living at home with John and Angela. It is the same for Adam. It isn’t easy for him to go do a lot of stuff on his own and I can only imagine how frustrating it is for him to be stuck with Tom and Daniella when he knows people his age have so much more freedom. Mind you,Adam has a lot more freedom than most people with autism his age but there is always room for more because he has had a big taste of it , so who am I to stand in his way when I opened this door to his possible freedom for him? I have to respect his needs and decisions even if they are hard for me to do so. Should he have stayed home last night?  Most likely, yes, but I am not him and he REALLY wanted to do this and he got to do it even though it was miserable. He had full control of his life for a night which is after all, the point of growing up, isn’t it?

When Lindsey checked in with me, everything was good. She sent a photo of them smiling. They had eaten and had arrived at the venue. There was nothing to worry about as he was fever free and was smiling and happy. Around 7:30 we were involved in something going on before the performance when Logan noticed the Snapchat on his phone going off. He chose to ignore it at first but the Snaps kept coming. It was his friend from hockey and school whose mother also happens to work with us. Checking out the messages, he smiled and said that his friend just said he saw Adam heading into the concert.  A bit later on, the same friend Snapped again to tell Logan that he wanted him to know that Adam was throwing up in the tunnel of the arena and that he wanted to let him know in case his helper did not tell Tom or me. Of course, Lindsey had her hands full at the time and did text me a short time after and said that all was okay and though she offered, Adam was insisting he stay as long as he could and that she would pull the plug after a few songs.

Here is where the human kindness comes in. We (mostly I) worry what will happen to adult Adam when we are not around to look out for him. Not yet capable of being 100% independent, Adam is probably at around an 80% capability of independence right now and will to my best guess top out at about an 85%.  He may surge to 95% and prove me wrong, which will be fantastic but from what I know now, he will be able to live semi-independently, in that he may need support when it comes to getting to places on time, being mindful of his schedule and with his purchasing ability to a degree. I do not have this worry over Logan. But what this story proves to me, is that I have less to worry about than I thought because some of the people in this little town which I moved to kicking and screaming (I am more comfortable in cities), may not be perfect for me but is is for Adam. I have had neighbours and friends call me to tell me that they had just seen Adam walking over at place X and they wondered if that was okay and if I knew he was out of the house. At the time, Adam was on his way to work or practice and they had not known that he was at that point of independence and it was very reassuring that people (adults) do know him and want to make sure he is safe. What was the icing on the cake for me last night was that it was a soon to be 17 year old youngster who saw Logan’s brother and not only was happy to tell him that he had seen Adam, but was concerned enough to contact Logan again when he saw that Adam was not well. In an age of Millennials who barely speak words, (which is ironic because one of the biggest goals with Adam was to get him to communicate with words)  Tristin, at 17, showed the human kindness and concern I hoped Adam’s peers would show towards him and us. So many people turn a blind eye. So many people keep to themselves. So many people do not make time to connect with good friends, old friends or make new friends, it is nice to see that a teenager – someone who is a part of the most criticized group on the planet – was able to show such basic human kindness and therefore maturity which has been lost on many Millenials. Tristin used the same device teens are criticized for using excessively, to Snap his friend and let him know about his brother because he knew it was the right thing to do. The human kind thing to do.

Lindsey was as usual her wonderful human kind self.  Some of the support persons we had when Adam was younger would have bailed and brought him home and insisted we come home or would not have agreed to take him and give it a try. I already was loaded with guilt and “if only’s” and she did her best to put me at ease. She is also very keen on treating Adam age appropriately and respecting him as a young adult who can make wise decisions and choices. Adam tried to stay for a few songs but he ended up sleeping with his head rested on her shoulder before she woke him and skipped out of the venue and brought him to her home where she put him to bed. She told me how sorry he was that he got sick in the tunnel and that everyone was looking at them (which is an extremely rare thing for an autistic person. Since when does Adam care what people do or think?) Lindsey told him he did nothing wrong and it just happened and he was not to worry about it or worry about the people who were watching because it was none of their business, to which Adam replied “Yeah, $%^% them!” in between hurls. (Well he is 18, he has ears, has internet access, loves you tube and goes to high school – hence the answer, lol)

How fortunate and blessed we are to have put together such an amazing team for Adam in what are the most important years of his life as he launches into adulthood. We had been exposed at times to fantastic people who personally supported Adam as a child and many who were fabulous in the rough teen years, and now on this springboard upon which we stand as we prepare to let the world have our boys and let them fly into this unknown (to them) phase of life called adulthood, I couldn’t ask for a better team.  We have a great young male role model in Sebastian. In Courtney, we have a perfect just -a-year-older peer who teaches Adam how to be and in Lindsey we have a friend who is practically family. She has been with Adam and Logan from the time they were 9 and 7 when she was their teacher, then their tutor and now just a great support worker for Adam and I trust her so much that she is included in much of the decision making when it comes to Adam’s future.

There is so much to still worry over. The world will never be ideal no matter how easy it is for us to make it ideal for everyone by just acting out of love and human kindness. It is reality and we must accept it because we aren’t doing enough to change it. My worry however, is far less than it used to be because in this little town in which I have not found my groove, there is a groove for our Adam. As much as I love the city and Adam enjoys being in the city, a groove would have been much harder to carve out for him there. In fact, it would have been close to impossible and it would have been frightening to think of all that he would be vulnerable to in such a large, busy environment. I know my younger child will fly far from the nest. He has a lot of me in him and he will not settle in one place for a very long time and I understand why. But I am satisfied that my older child will thrive in an environment that is home to kind humans of all ages who are decent and good. The stories about Autism are not always uplifting. Autism is difficult. Autism is puzzling. Autism is isolating to the person and their family. Autism can feel like a life sentence that no one signed up for. Today, my story is one of hope for not just people with autism, but for all people. In spite of my weariness. In spite of my worries. In spite of my frustration. In spite of all the road blocks in this journey with Adam. In spite of my life, I have hope in humankind and this 51st birthday will be one to remember as the birthday when I felt in my heart the kids are going to be just fine.

 

 

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There is No Colour : Learning to Un-Learn

 

There Is No Perception of Colour in an Autistic Person’s World

 

Throughout his life, my autistic son who is brilliant has been perceived as being less so. The people that matter in his life, know the truth about him and I have never wasted any time trying to prove his worth to anyone not intelligent enough or anyone who is too self absorbed or frivolous to understand. Over the years of rejoicing through the great times and wading through the murky, thick mud of the heartbreaking times, I have come to know that the truth about both my children is beautiful.  In a time of chaos brewed by racism, terrorism and hatred I feel their father and I have managed to put a sliver of hope for better on this planet.

Two days ago sitting in a cloud of misery borne out of merely watching a half hour newscast, I heard Adam in the other room in full *echolalia going on happily about something that was happening in the Big Bang Theory which is the latest show he likes to binge watch.  His *scripting had something to do with the character Raj and I thought I would do a little test.  I called him into the living room and asked him what was going on in the episode he was watching and he proceeded to tell me how funny it was and that it was because Raj was saying silly things.  Feigning ignorance, I asked him which character was Raj.  He turned to go get his tablet in his room so that he could show me when I stopped him and asked him to describe Raj. What you have to understand is that Adam hates being pushed into descriptive language but it is something we are working on and I wanted to see what he would say.  He twisted his mouth, scrunched his nose and then he said,

“He is the tall one,”  to which I responded,

“So Leonard is …”

“Leonard is short. Raj is a guy,” he offered.

“A guy like Leonard and Sheldon and Howard?”

“Yes. Howard is short,” he replied.

“But I still can’t place Raj. Which one is he?” I pressed on.

Adam proceeded to say adjectives like tall, skinny, silly, funny, jokey…he never said that Raj was brown. Not that he does not know his colours –  I remember vividly when he was 5 and he was  learning colours he certainly realized that mummy was brown but that was it. It was an observation when he was 5 and to this day, Adam has never used colour to describe anyone because he has never associated a person with their colour – ever. I have however had to un-teach some of the derogatory words he has heard in school over the years. Words that sometimes were directed towards him when misinformed or rather poorly-informed kids saw that I was his mother. He would say the words completely out of context and I would have to spend weeks purging them from his vocabulary by teaching him in the most basic of terms that some words are just so very bad.  I hope I never have to un-teach him words such as those again but I shan’t be naive because this world is getting worse.

People who don’t know Adam or those who know him and have labelled him, will never see beneath the surface the way those who know him do.  He may have to struggle through some days sometimes because of his autism, he may have to do things differently to get by and he may have some days when having to adjust things to suit him or to keep him successful is a real pain in the ass for whomever has to make the adjustments but one thing is certain –  Adam sees people.  He sees their soul, he sees their personality and he sees their beauty because even with perfect vision my son cannot see their colour. There is a purity about him that I attribute to his autism that I wish every human had.  He knows what pretty is but he never calls anything ugly although he understand’s the meaning of the word. He does not place any emphasis on riches but he certainly understands that he has to help someone who may be poor. He is paid in self satisfaction, happiness and pride for every job he does and he works harder than most from beginning to end.  Hmm…autistic with a work ethic. Chew on that for a while.

I shake my head and laugh so many times when I think of the resolute therapists who incessantly repeated the importance of integrating Adam into the world by working on reducing or stopping his “inappropriate” behaviors and quirky actions so that in essence he could be more like other people in society.  I think it should be the other way around because I have seen what my boy sees.  I have laid beside him in that little playroom as I waited on him to meet me halfway; doing what he did, stretching out our hands to the light streaming through that tiny basement window, watching the little specs of dust dance between our fingers. I remember feeling a glorious release when we would roll down the hill at the playground near our house when he and his brother were little.  I remember the giggles and the all out raucous laughter, the smell of the grass and the feel of the dirt on my body. I’d forgotten the abandon of childhood and I am eternally grateful to my children for re-introducing me back then to just how much fun and how freeing life can be. I remember laying on our backs in that playroom staring at the ceiling, humming and becoming so relaxed that my body sank into the carpet as I was lulled to sleep by my little boy’s sweet voice.  We met each other halfway in that playroom – he, discovering the wonders of the world as I presented it to him; me, recognizing just how over stimulating and bombarding the world actually was. In that playroom where I taught my son everything he knows, I learned from him how to let the noise go, how to hear what was within me and how to tap into moments of peace.  Adam knows how to get back to his soul.  Even when it is most difficult for him he knows how to tap into that place of goodness, knows how to let go of all that has him tangled and twisted up emotionally in order to restore himself and dwell in a place of peace and love. Shouldn’t we all figure out how to do that? Think about how much less pain we all could cause if we are able to release anger and horrible, hateful or violent thoughts from our minds and hearts and return to a place of peace and love and restore ourselves and each other. Yeah, right…integrate my son into society as it is, my ass.  We should be so lucky to be more like him.

 

 

Learning to Unlearn

 

It is no secret that to me, my second son Logan, is one of the best people I know. My aunt Meiling would call someone like Logan “too mannish” because he is far too young to be this miniature man of integrity and depth.  He has a sensibility that I have not seen in anyone so young.  His ability to discern bullshit from truth is something I did not have mastered by the time I was a teenager and to quote my husband “Watch for our son because anyone who ends up involved with him will be beyond fortunate because of  the human he is,”

I have tried very hard to raise Logan to not see race, creed or colour.  It was easier with Adam being autistic but by the time Logan got to grade 2 he learned what colour was unfortunately.  Looking back on my own childhood, I would say I was lucky to have grown up in a multicultural, multiracial society and be raised by parents who had friends from all walks of life, all colours and religions but like Logan, when I was 5, even sweet T&T way back then had it’s structure and divisions that were somewhat subtle at times blatant at others.  I remember what living with that was like – bouncing in and out of acceptance, hearing derogatory racial slurs in conversations, in traffic, putting up with disgusting comments from idle limers as my mother and I walked by them. My childhood was a good one but there are things I learned about the world that I was determined to do something about.  I knew there was no way to protect my children from these lesser things but I could teach them to be better and also be better than me and those before them. It may be naive of me but I like to think if I could just put two decent and good humans on the planet, I could make significant change.

So with Logan, I also did a little test.  I was in the living room when his friend came to the door.  He had just come from work on the reserve and he made a crack about delivering watery gas to our door.  The boys bantered back and forth with little jabs about each other’s ethnicity and then went out to grab a couple lemonades from the store.  When he got back, Logan joined us to watch the unfolding of events in Charlottesville and he was, like we were, disappointed in what we were witnessing.  Pausing the broadcast, I told him that I had something I needed him to do for me moving forward in light of all the hate and racism in the world.  I asked him to stop the light jabs among his friends that had racist tendencies.  He assured me they were all best buddies and no one took anything personally but I counteracted his point by pointing to the television.

“It can start with simple jesting and it can evolve into this,” I told him. “We say stuff among our friends and no one is really offended so we accept it and then it gets a little more pronounced and we accept that too and then we have a difference of opinion and someone says something in anger and even though things may cool down and you are still buddies, it was blurted out and there is a dividing line in the friendship.  We cannot accept racism and lighthearted racist ribbing is not to be done anymore. It is not accepted and if you end it, it will end in your circle of friends.  The same way you do not tolerate the use of the word retarded to describe mentally challenged people, you must not participate in or tolerate racist jokes or jabs at all,”

My boy looked me in the eye and told me he understood and he would change it. Two days later when the friends were at the door, I was in the kitchen and one of them greeted the other with another native joke and my boy said,

“So, here’s the thing.  We can’t do that anymore, okay? My mom spoke to me about it and I agree with her.  She wasn’t mad or anything but she’s right. We are friends and we don’t want to get into talking like this so no more racist jabs. We cool?”

I heard the pseudo-manly voices echo in agreement and just like that they went down the street in front of one of their houses and started shooting hoops.  I didn’t tell him I heard them that night and in the car yesterday, Logan told me that he spoke to his buddies and they all agreed not to make anymore dumb jabs about race.  He said they actually agreed they didn’t really know why they were doing it.  They didn’t think it was funny and they didn’t really like it. I know Logan has struggled with the answer to the occasional question “So what are you? “from some idiot after they realize I am his mother.  Today he answers quite simply, “Human….a guy… a person,” and if they persist he suggests they “might want to do some travelling…read a book…get exposed, eh?”

There is so much going on now in the world. Our time is as filled with turmoil as it is with bliss – sometimes it is so overrun with turmoil that we have to do all we can to find bliss so that we can hang on to a shred of decency and sanity.  I am in the middle of my life and one day it will draw to an end but my children’s lives are just beginning and I can see that so many young people are trying hard to hold on what is real, to what is pure and what is true. It is an uphill battle and I understand why so many of our youth have difficulty coping with life as it is. They have so much more to deal with than we did and everyday they try to separate what is good about living in their time of technology from what is heinous and all I can do in my middle age is try and stay abreast of it all and not criticize them or compare their time to mine but truly support them however I can.

If there is one thing marriage and parenting have taught me is the importance of communication. In all my years of raising my boys I have never talked and listened more than I do now.  Every week there is something I learn that was not a part of my vocabulary.  Forget learning French, German, Cantonese, Spanish or what have you, I have had to master “youth speak” in ways I never imagined and as un-cool as I know I am, my husband and I are the first stop when my boys’ world come crashing down around them.  Their father and I won’t be there for them every time it happens and one day we will not be here at all and I hope their coping skills continue to be strong.  It’s like my husband says, “Parenting is 50/50. We can only hope that they hold on to that fifty percent of what we instilled in them the question mark is what they do with the other fifty and we can only hope they have the strength of character to navigate it in the right direction,”

In Logan’s lifetime he is going to learn and experience many things.  Some will be great and some will not and he will have to choose between doing the right thing or the easy thing, the right thing or the popular thing and the right thing or the wrong thing. He will soar and he will crash and he will soar again and his life will roller coster on just like any other life. My hope for his generation is that they can learn from the mistakes of past generations as well as their own and that they can release or un-learn some of the things we may have carelessly and mindlessly taught them. I hope they are better than we are and better than their grandparents.  I hope they put humanity first and that they operate from a place of love. I hope their generation sees an end to terror and most of all I hope they un-learn racism and bigotry and learn acceptance.  Who knows, maybe…just maybe theirs is the generation to turn the world around and propel us upward from the downward spiral we seem to be on.

 

*Echolalia is the repetition of words or phrases with sometimes no meaning or function attached to them. … Sometimes this behavior is termed “scripting” because the words and phrases the person is repeating comes from tv or movie scripts.