Surviving the Loop the Loop – The Prodigal Wallet.

When Tom and I renewed our vows on our 10th anniversary in 2007, he talked about the incredible ride we were and still are on and that the only way to truly enjoy a ride is to not know what is coming and sit tight and ride it out when it goes chaotic and random. Well, we only know chaotic and random and this year certainly we endured many loop the loops on the ride that is our life. We’ve had a lot of experiences that created new feelings; new ways of doing things; looking at things, that I suppose, took me by surprise. There was not a lot of time to write this summer but on Labour Day weekend, with one day to go before school started, I sat in my little home office, in front of my old friend Laptop, my fingers retrieving stories I had tapped out about our wonky family life. This is the story I wrote about Adam’s lost wallet in May 2018.

Today went down hill when we realized Adam’s wallet was missing. I usually have stuff they can grab from the fridge or freezer that they could warm and take for lunch but it’s been a hectic work week and I remembered Adam had 5 bucks in his wallet and I decided he could buy his lunch at school, since there was nothing he really liked in the fridge that he could take with him. Court was working with him lately to try and make sure he checked for his wallet and his phone to teach him how to be responsible for his things and she thought it was secure in his coat pocket when she dropped him off after the movies.

My autistic teen does not really get the seriousness of losing his wallet and at times, has a really sketchy short term memory, so getting the clues needed to piece together where it might be, was for this mother, quite stressful. We retraced steps and even called the police to see if anything was maybe turned in. The only place left to check was the theatre but when school is on, there is no staff on site until about 3:30 pm. The mental weariness of knowing I had to cancel his bank card and then looking up the procedure of cancelling his ID card and health card numbers just started to swirl inside me like a tornado and then I, the non-crier started to sob.

“He’s not ready,” I cried to my husband. “He’s never going to be ready and if we are not here to help him who will really care? Who will turn every stone looking for his wallet? Who will try and get the clues out of him and who will look up what to do and make the calls?”

My patient, patient husband, kissed the top of my newly grey haired head and told me simply,”Someone will,” He told me that as capable as Adam is, he will always need help with the fine tuning and that losing the wallet was a good lesson for us because when it happens again (and it will) at least we know what to do and this experience will help us figure out ways to lessen the number of times something like this would occur.

So, while Tom held down the fort at work today, I worked from home and also worked on cancelling Adam’s bank card. I decided I could at least prevent someone from accessing his account but would wait on cancelling the other cards until we checked the movie theatre. Let me just tell you that losing your wallet is one thing when you don’t have special needs, it is a complete gong show when you do. Last year, in the fall when Adam was still 17, I set up his new bank account so he could collect his ODSP* the following year upon his 18th birthday. It had to be a joint account because he was still a minor. I set up accounts for each son and all was well. Now that Adam is 18, I was not able to cancel his card even though his account is a joint account with me. He needed to call in himself. After explaining that his autism would make that scenario difficult, I finally got the bank to at least freeze the account until we could cancel the card. They struggled because the millennial on the phone did not have a field on his computer screen that could help him make allowances for exceptions like Adam. No word of a lie, that was what I was told. I suggested he maybe ask a manager to help him figure out a way but he was a millennial too (not to knock them all) and said if there was no field on the computer screen, there was no way. Adam had to make the call. I started laughing this insane cackle. Adam. Adam had to make the call. Adam, who HATES talking on the phone, especially to people he doesn’t know. Well, the whole family had to be in on that because it takes 3 people to help Adam get through scenarios that other people could navigate with ease.

When the boys came home from school, Adam made the call. When asked his full name he answered John Adam James and he also added “I’m looking for my wallet” to which the person on the phone said ” Oh, I just need your name at this time,” to which Adam said, “John Adam James and I am still looking for my wallet,”.  The rep realized that this was the point in the script that called for that thing called human empathy and he said that he understood because losing a wallet happens to everyone. It was a sweet attempt because it was clear to him now that I was not bull shitting when I said talking to Adam was not going to be easy.

Adam proceeded to give his date of birth and his address however when it came to remembering the branch where the account was set up and what the answer to the security question should be, Tom had to whisper so he could answer correctly as I was not allowed to “coerce” him. Then by process of elimination they needed the card number and the boys accounts are joint with me so we had to read out the other two card numbers to isolate Adam’s. I read mine and Logan read his and had a blast taking his turn with the guy because by this time Adam was antsy and scripting quotes from movies and it had become significantly louder in our house. Adam is talking, Tom is trying to settle him down so Tom is talking, I am just laughing and Logan is well,”Loganing”.

“You ready for my information, Sir?” he began.  “Listen up because it’s getting loud. That’s what it’s like living with autism. See, this is what we were trying to explain to you. He can’t answer you alone. That’s just the nature of the beast. You would have had an easier time talking to Mom,” he said, as polite and jovial as always, schooling all the while.

Fast forward, we got the card cancelled, ordered a new one and a new PIN all before we found the wallet at the manager’s office at the movie theatre when they finally opened. For all the absurdity, I was disturbed to know that those who have no voice, those who struggle with conversation, those who need and have advocates, still in many areas of our daily lives, still have no voice. Losing a wallet is an inconvenience for us but a disaster for them. If my son had been non-verbal, how would I have been able to cancel his card? I learned too that for his ID card and health card and any government issued card, he would have to go in person to fill out the form and sign his name. Easy enough for Adam with a bit of help for the form because he does read and write and can sign his name but what about those who can’t?  If upon getting these important documents one can see that a person has a disability, why can’t the powers that be, find a way for those who can’t speak or write to skip the usual formalities and get straight to the matter of protecting them from identity theft and fraud? They need help getting these documents in the first place so they’d obviously need help when they are in situation regarding a lost or stolen wallet.

Today, formality and strict regulation was ridiculously humorous for a few seconds and then it became downright irritating and painful for my son. It took almost half an hour to cancel his bank card over the phone because a customer service rep was only able to stick to the one way of doing his mundane job. I could hear how flustered he was getting trying to speak to my son as if her was just another customer. But Adam isn’t just another customer. Adam is representative of the now 1 in 45 persons diagnosed with autism and he is one of many persons who struggles with verbal communication. Sure he can speak but he cannot conceptualize things the same way we do. Things are different for him because his brain is wired differently and he lives in a world that has evolved tremendously in many ways to incorporate people like him, but it is also a world that is also as inflexible as it was 40 plus years ago.

The day, however, was not completely stressful. We found the wallet with the 5 bucks and all his cards inside. It was reassuring to know kind, honest people still exist. I hugged the movie theatre manager tightly and she hugged me back saying she had never met anyone so grateful to find a wallet. Adam had to go to Tim’s for a frozen raspberry lemonade with Logan to settle himself after his stint on the phone and did not come with us to claim his wallet. To be honest I was prepared for a struggle to get it back if it was indeed found, because he wasn’t with us but the manager came out, asked me what colour it was, who it belonged to and what was in it and presto! She got the description, she realized we must have been his parents and we didn’t have to sign anything. She understood our situation and she made a human decision. She didn’t worry about formalities or rules. She was just happy to return the wallet. She was happy to help. Most times, that’s all people like Adam and parents like us need.

On the ride back home Tom glanced at me and said the most wonderful thing I’d heard in a while. He said, “You know you gotta love being a parent when something great happens to your kid and you feel fantastic! It didn’t happen to you, it happened to them but you just feel great! Today we lost a wallet and it took us down a worrisome road where we questioned if Adam was truly ready for independence and for better or worse, he spoke to a stranger on the phone and answered many of the questions without our help . And while we were stressing over his wallet, we received great news about Logan. Watching Adam’s big smile when we returned his wallet was like watching him look at me for the first time all over again. Just a feeling of pure joy, you know? We got great news about Logan and we found Adam’s wallet intact. Nothing beats being a parent when you have a day like today!”  Ever the optimist, I dare say, he’s so perfectly, completely correct.

 

 

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.

 

 

The Little Doll and the Giant Grasshopper.

Once upon a time, in a small town, that fancied calling itself a city, there was a beautiful friendship.  It didn’t start off smoothly.  In fact, it was the most unlikely of friendships because he was a giant grasshopper and she a tiny doll, controlling her portion of the world in a magical throne. Sitting on her special throne, she breathed in the cleanest of air through a minuscule tube, discreetly placed beneath her tiny nose. At 6’2″ and 150 lbs., the giant grasshopper bounded about, usually with a big smile on his face, happy to be alive in his own world; tolerating (yet not completely conforming to )the world presented to him. Energy abound, always moving quickly, his long limbs propelling him, one of his unique powers was speed . His job was to race on the track in the summer and on the ice in the winter with the best of all of the other specials (and sometimes regulars) like him and he did well, bringing back to the hub, ribbons of red and blue and medals of bronze, silver and gold. The giant grasshopper also had natural rhythm and could pound out head nodding and foot tapping beats that kept the other specials in the hub moving while they worked….when the drumming didn’t bother them that is…and if it did, he would switch  to humming and singing popular tunes they all knew and loved.

In spite of his wonderfully unique powers, the giant grasshopper struggled to make friends in the regular world because he couldn’t come up with interesting conversations. He knew in his head what he wanted to say, but it didn’t always come out of his mouth just right and he chose to say very little. Still, people tried to get to know him, tried to speak to him but it was the specials and their subjects in the hub who loved him enough to accept him as he was – a giant grasshopper of few words but with with actions that spoke louder than anything anyone could ever say.

The first day the giant grasshopper was accepted into the hub, he frightened the little doll to tears with his long limbs, big movements and loud quirky noises. For weeks she cried and complained that he made her afraid and for weeks he didn’t understand what he was doing wrong but the loyal subjects who worked for the specials did not give up because they knew the tiny doll and the giant grasshopper were good for each other and they were determined to help them become friends. By the end of their first semester together, the loyal subjects had the most unlikely of friends sitting beside each other, eating lunch. They rode the same chariot to the hub every morning.  On breaks, the grasshopper was even seen standing still ( something that was very difficult for him to do) looking over the doll’s shoulder while she controlled the world through the game she was playing on her tablet.

In time, the tiny doll got quite used to the energetic, musical grasshopper. She became so comfortable having him around, she even ventured out of the hub to help the regulars at the local food bank. Though she hated having to take her magical chair on the lowly city bus, she would go in good spirits if her friend the giant grasshopper was by her side. If he could not go, neither would she and if anyone tried to force her to go, they would be subject to her well-honed power of feist. Time passed and the unique bond between the giant grasshopper and the tiny doll grew stronger. When she would not eat, the grasshopper would sit beside her and simply say “Eat your food,” and she would. When she wanted to keep talking, even though he didn’t seem to be listening, he was as he was just happy to be sitting among the doll and the other specials. When his brother, the locust, taught him how to text, the grasshopper invited the tiny doll to join him and his other special friends for dinner at a local restaurant or to join them for an hour of bowling. Time and again, the little doll refused but one day, she said she would come to dinner if he promised never to ask her to go bowling again. She came to dinner twice and and giggled and smiled through the entire meal, the grasshopper fascinated by her her pretty painted little fingers and toes.  Whenever the doll was broken,(i.e. crying) like a true man, the grasshopper made it his job to fix her.

“She’s upset. Why is she crying?” he once asked.

“She does not want to go to the dance in the gym,” the subject replied.

“Okay. Look…just… Dance with me,”

Tears ceased and the problem was solved and another year in the hub came to an end and the specials and their unique powers went on break. The little doll was old enough to move away from the hub and live full time in the world of regulars. She played unique powers baseball and she attended unique powers dance class and though she did not see the grasshopper everyday she texted with him and came out to dinner whenever she could. The giant grasshopper had gotten used to the little doll’s absence from the hub and not seeing her on the chariot that transported them to the hub every day but the texts helped to keep them connected and he was thrilled that he was going to get to see her at his upcoming 18th birthday. She was the first name on his guest list and though he did not have any great words to say to her, he was looking forward to spend time with her and the other specials and their unique powers as they shared ideas on how to teach the lowly regulars how to properly run the world.

The day the giant grasshopper and his brother the locust were planning to text the specials about his birthday dinner, their mother found out that the little doll had died the day before. Her most unique power was her most dangerous power and though she was successful keeping it at bay, it snuck up on her and with no time to put up her defenses, it overpowered her and took her to Heaven.

When the giant grasshopper’s mother told him what had happened to the tiny doll, she was not sure how he was feeling about losing his friend.

“Do you remember Grandad Grasshopper?” his mother asked. The grasshopper nodded. “Tell me what happened,” she said.

“He got sick.” he replied, looking out the window.

“And?” his mother urged.

“He died,” he said, looking her in the eyes.

“Yes, he did. You know your friend the little doll?”

“Uh huh,”

“Well, son, she got sick and she died,”

“Oh.  She died?”

“Yes. Like Grandad Grasshopper, she got sick, she went to the hospital but they could not fix her and she died but just like Grandad, she is sleeping now.  She’s sleeping forever and is in no pain. She’s not sick anymore and she is in Heaven,”

“With Jesus?”

“Yes”  The grasshopper listened to his mother’s words, nodded and said,

“Okay, thank you. I’m going to my room now. I’m good,”

From time to time over the next day, the grasshopper would ask “The doll is gone?” or “She died? The doll is dead?”  and his family and his loyal subjects would confirm that she was indeed gone. His mother told him that there was an opportunity for him to see the doll one last time and say goodbye and the grasshopper decided that was a good idea. When his day was done at the hub, he changed out of his uniform into  a nice shirt, tie and jacket and went to where the doll was resting. He saw her picture, he signed the guest book and waited in line to see his friend. Being taller than everyone in the room, the grasshopper saw her lying peacefully in her casket.

“There she is,” he said. “She’s sleeping. She should wake up,”

“She can’t, son, remember?  What happened to her?” his mother asked him.

“She’s dead,”

“Yes,”

“Dead, dead…forever,”

“Yes, she is asleep forever but she is…”

“She is in Heaven like Grandad Grasshopper, with Jesus.  Are you okay?” his mother asked searching his face to see what he was feeling. The grasshopper said nothing but gave the thumbs up. As they approached the doll’s parents, hugs and words of kindness and sympathy were exchanged and the grasshopper shook hands with her family members and nodded when they thanked him for coming. He stopped and stared at her, his his face unreadable and he moved along the line of people to the very end where he took a seat on a nearby sofa. Hugging a cushion close to his chest, he buried his head into it then lifted it, revealing a brief smile.

“What do you want to do now? asked his mom. “Do you want me to take you home?”

“I want to see her again,” and he rose, looking even taller than he was, walked to where the little doll lay and knelt beside her. His loyal subject told him that he could touch her if he wanted  and he did, gently placing his large hand on her tiny one. He paused for what seemed like an eternity then he sighed and said, “Well…see ya…I love you…I’ll miss you,” He got to his feet, turned and left the room but not before taking the memorial picture card of her and gently kissing it before putting it in his pocket.  Noticing his mother’s face, he asked,”You okay? You look sad,”

“I am,” she replied “Thank you for asking. I am sad but I will be okay. How about you?”

“I’m good,” Let’s go home,”

For a few hours after the visitation, the giant grasshopper would randomly tell his mother, father, brother and loyal subjects that the doll had died. He would get reassurance from them that she was never waking up and that she was gone forever but she was okay because she was in a better place everyone called Heaven.  The photo of them at the food bank and the card he took from the visitation are in a visible place in his room and I suspect, in spite of the challenges of his  unique powers, he does feel deeply and he will always remember his friend, the little doll.

 

 

To C: You Will be Missed but Not Forgotten

I have a heavy heart this week. I just came off a heavyhearted October when we laid Logan’s friend’s sister to rest and this morning I found out Adam’s friend and former classmate died suddenly yesterday. She had a medical condition that rendered her to a wheelchair and she had special needs but she was, we thought okay.  She recently graduated from high school where, like her Life Skills classmates she stayed until she was 21.

As I got to know Adam’s classmates, I realized they all wanted what ever teenager/young person wanted – to hang out with their friends without parents hovering. So I started inviting them all to join Adam at a restaurant once a month, or go bowling or go to the movies. They loved it! They were just friends, hanging out with no parent interruption and they were just like everyone else.  C came out a couple times this year and she had a great time. She had a sweet giggle and she always had her make up on and her pretty little painted toes. This afternoon, Adam was going to text her and invite her to his birthday dinner next month. His teacher called me this morning with the news and we both were sobbing and she and I decided that she would tell him first and then later this afternoon Tom and I would tell him again and help him understand that she is gone.

Adam is autistic and struggles with emotional display but he showed compassion towards C. He was concerned whenever she cried and he tried to make her feel better. They did their Co-Op at the food bank together and she ventured out to that commitment partly because Adam was going to be there with her. I think C was one of my son’s true friends and we will miss her. At least, we have one photo of them together and I will frame it for him so he will not forget her.

I am torn up by her passing because once again someone who represented all that is good in this life has been taken from my son and from so many people. I feel for her mom as I know how much she sacrificed and how hard she tried to give her daughter the best possible life and now, just before Christmas she is gone. My second boy, Logan, in his attempt to comfort me and make sense of yet another young person’s death, said,”I believe in my heart she is already back. I believe she has returned in the form of a newly born human. She will grow with no health problems and she will run and jump and dance and she will not be sitting in a chair anymore. We may even recognize her in someone else,”

I hope my son is right. I also hope if her spirit is soaring, that she soars about her friends and that she finds Adam, and sits on his shoulder and that she guides him and watches over him and helps him as he moves into adulthood. I can’t stop crying for the loss of C and there will be an empty space at the table next month but they will raise their glasses to her and she will not be forgotten.

Rest in peace C. My son was your friend and he really did care about you and I know you cared about him.

Planning Everyone’s Freedom in Spite of the Hand You Were Dealt.

I remember talking to a fellow “autism mom” a while ago.  We were discussing our ideas or more likely our hope that our children would live independently (with assistance) away from us.  Many parents like us often resign ourselves to the notion that our children will have to live with us forever but when Adam was diagnosed, I made it my mission for him to become as independent as possible because, according to this mom I was speaking with, we didn’t sign up for this. We had babies who seemed okay, who by the time they were 2 had shown enough signs to warrant the diagnosis of autism.

Call me mean, call me cold, call me whatever you want but don’t forget to call me honest. My words are based on my family’s experience with my child because each child with autism, like every child on the planet is different.  My kid is not noise sensitive, does not adhere to rigid patterns or schedules, he can be touched, does not rock back and forth and he eats a variety of food – not just chicken nuggets or couches like so many autistic persons do. In fact, if you just saw him out and about without really scrutinizing him, he would appear to be another lanky, energetic teenager. Adam does a shit load of things and functions in situations that no one(except for me and his father) ever expected him to. We put in the love, the work and the time as did he and he has found his niches in this life and looking from the outside in and the inside out, he has a great life because we always believed if we challenged him in good ways, if we taught him to cope with the world, if we helped him cope with his environment, he would be able to live as full and as independent a life as possible. We never let the strange habits, odd reactions and sensitivities he occasionally displayed prevent us from teaching Adam how to cope with this world and function in it. We learned to work through things together. Taught him not to be afraid or wary of certain noises or things while taking into consideration the extra time he needed to learn to handle the things that were overwhelming to him. I suppose looking back I could say Tom and I took whatever the autism threw at our son and at us and we molded it into something that was manageable.

Two jobs, two elite level competitive sports, and an aptitude for the arts later, we have a well rounded young man in spite of the challenges of autism.  The problem with what we have done to make him as capable and independent as he is, is reflected in the type of person he has evolved into. I suppose we could have chosen to take all the sensitivities and oddities and choose to let them overwhelm him and we could have made the decision to sound proof his room, put headphones on his head, not attempt amusement parks, not put him in competitive sports and let him exist in his solo world, spinning the wheels of toy cars while lying on his side. Maybe if we did that he might be a happy little lump content in his own world. But I did not want him living in some facility, not in touch with the world and not in touch with us.  So I picked him up off his side, sat him on his bottom and showed him an alternative to playing with toy cars and changed his life for what I still believe is for the better.  I reached in, found his little hand and held on to it tightly because I was not losing my child to autism. But maybe wanting him in our lives also bit us in the ass. There is no way to sugar coat this (but I suppose I can be polite) – our son is a jerk. Adam has many normal teenage qualities which I accept. Like most teens, his father and I (mostly I ) are major irritants in his life. He doesn’t like being with us anymore, does not want to do anything with us anymore except if he thinks its fun and he is moody with us 24/7. He hates listening to what we have to say. One minute we were loving and holding this gorgeous, curly haired cherub. We were teaching and helping him and cheering him on as he slowly but surely became capable of so much and now that he treats us like shit, it’s quite the slap in the face. Teenage years are not easy  –  how can they be when you have one foot in childhood and the other in adulthood and you drift in between the two worlds every 15 seconds?  Add a big scoop of autism to that and you have puberty stink, puberty ugly, puberty jerk…whatever you want to call it.

The hard part for us is not so much that he is as teenage as it gets (there are two teens in the house and we get the vibe of the stage of life they are in), it’s Adam’s wretched personality. He seems to have a penchant for deliberately getting under our skin. He has certain things he will do that he knows will be disruptive or annoying to us and try as you might you can never truly ignore him. He won’t let you. There are things you can do, medication you can use that improve focus, reduce anxiety, etc. etc.  but you cannot medicate the asshole-ed-ness out of a person. If our son was not autistic, he would still have the personality he has. He seeks negative attention and pretty much only with us.  I hear his support workers and teachers talk about how even though he has occasional moments that are difficult, he shows great empathy. I hear details of the conversations he is able to have now and how helpful and motivated he is and at first I didn’t believe them but these people don’t know each other so why would 10 different people who don’t know each other, lie? I have also seen video footage of him doing all these great things and showing how nice and well adjusted he is and the minute we come home he often goes right to button pushing. It’s almost like some sick, twisted way of drawing pleasure at our expense.

Our relationship with Adam now is nothing like it used to be and I don’t know if it will ever be warm or close again. I think when he lives semi-independently with like room mates and he will really get a sense of his independence from us he may have a greater appreciation for any time he spends with us. It has been very hard trying to love someone who does not like you or perhaps may not love you. I don’t know how he feels about us and I am not going to assume because he lives with us or that we are his parents that he loves us.That would be naive and even a little arrogant. His condition is based on an inability to understand or display emotion in a usual way. His condition results in a constant social struggle and while we accept these things, it is clear that what he likes to do to bother us is intentional and reserved for us.

We have worked hard to help him become (as did he) the whole person that he is today. Adam is very successful and while he completely rejects us, it is not the rejection that is the difficult part – it’s the pleasure he seeks by trying to make us upset. It is the disrespect and the shitty thing is, in spite of the struggle of recognizing emotions etc., Adam knows when he and others are being disrespectful. His teachers can testify to that. It has put a bitter taste in our mouths when it comes to dealing with him. There are some days when we go through the motions to get to the end of the day with him and we are so counting down the days to when he takes over living in our current home and we move out.

Before you pass judgement note that we are going to have to buy a new place for us to live without having the luxury of selling our current home in order to have a down payment for a new one. We are letting our son continue his life in the home he had since he was 7 because it makes his living situation easier for him. He will be close to transportation, his work and the places where he practices for his sports.  It is in close proximity to grocery stores, the mall, our church, the movies and restaurants and everyone in the neighbourhood knows him.  We have taught him how to walk to and from many of the places he needs to be and we have done all we could to do what ever parent of any child hopes to do which is simply to raise happy, respectful, kind and independent children. We are not perfect parents by any means but we did the best with the hand we were dealt because he was brought into this world out of love and was raised cloaked in love and as hard as it is for us to warm to him lately, he is very much loved and cared for. But puberty was not kind to him and certainly not kind to the family and most days we just want to scrape him off of our skin because as much as every day is a new day and a new opportunity and a new day to hope – this child, at least one time in every day intentionally does something disruptive (and he will tell you it is his intent to be disruptive and disrespectful) and we are tired of that. Yes, he is special, he has in many ways been a blessing and he has taught us a lot about ourselves, himself and our capabilities and strengths as people and as a family but man oh man, has he ever tested our patience and love. I understand he has many things he struggles with or copes with to get through a day. We have made our home and the places we go and the things we do as easy and as tolerable for him as possible. We have observed him, listened to him and respected his needs and we are very proud of him but we just don’t like living with him. We are good people.  We are not to blame for his autism although as a mother somewhere deep inside of me I will carry unjustified guilt about this child’s autism right to my grave.  We didn’t sign up for this and we don’t deserve to parent him right through to our death either. I cannot wait for the day we part ways because he will finally get what he wants – to be free of us and we will finally have part of the life sentence dropped. The life sentence of being the parents of a child with autism whose “thing” is to seek negative attention every day. We plan to go on a long vacation the day we leave our son in our home with room mates and support. He will adjust to his new life the same way he adjusted to travelling with his Special Olympics teams without us and his Co-Op at school and getting about with his support workers without Mummy and Daddy.

I suppose I could say I should have been careful about what I wished for – I got an independent kid who is capable of handling his life but his father and I also ended up with a kid who realizes this about himself and who now sees us as irritants and obstacles whom he dislikes yet in some bizarre way he likes it a lot when he succeeds in making us mad. He says he is sorry but he never is as in the very next breath he sets out to push buttons over and over again.  We do a lot of ignoring, re-directing and walking away in order to squash his attempt at pissing us off. He walks away defeated most times when we are able to see our plan through but in spite of the love his father, brother and I carry for him in our hearts, we look forward to the day we walk away because just maybe that will be the avenue we can use to re-build our relationship with Adam.

Like I said before, I don’t care if anyone passes judgement on me or my family because we know the life we have lived.  We know the sacrifices the three of us have made because we love Adam. We also know we did it on our own mostly with the help of strangers we had to trust. Strangers, we have come to know and love, all the way from Alberta to Ontario. Strangers who also helped Adam achieved all that he has. I cannot speak of other persons with special needs, but living with Adam’s autism, for all the goals and milestones he’s reached, for all the pride it has filled us with, for all the good, I fear there have been more difficult times – times where we have been sad, times where we have struggled, times when we felt utter despair.  We have never been able to just put him in the car and go anywhere with him…to this day, there always has to be a plan and a plan B and C. In the midst of the autism, we managed to raise another little boy as normally as we could – giving him the attention he needed and the guidance and time he deserved while having to ask him to understand that he had to learn to wait… a lot.  Our second son could have rebelled, could have resented us and he could have gone astray but instead, he waited, learned to be quite self-sufficient at too young an age and still found time to help us out with his brother. He has been the best support worker Adam has ever had and he has helped him fit into this world in a way we could not teach him. Logan taught Adam how to be a kid, how to act “cool”  and how to, as he ever so sweetly puts it “blend in” and he has stood up for his brother in ways no younger brother should have known how to do.  He taught Adam how to bike to their favourite restaurants and taught him how to use his bike lock and how to work the combination. He taught him how to use money and how to use a cell phone just as well as any teenager. He took over escorting him to the bathroom and showing him how to go in, do what he had to do in the washroom and getting out. When he is with me and Adam he is the one who takes on what Tom would ordinarily do in the public washroom with Adam. Logan is the one who reminds him to keep his stims at bay and not draw attention to himself which can make him vulnerable.  He took over doing that at age 9 because he knew Adam was too tall to come into the ladies room with me at 11. I remember the day he told me,”I can do this Momma. I’ll do it because you don’t have boy parts”.  Logan didn’t sign up for this either but he has such love, acceptance, patience and respect for his older brother and wants to help Tom and me with him any time that he can. That kid put up wit all that Adam threw at him and still, he continues to persevere through the best and worst of what is thrown his way. Logan needs space from Adam as well. He has to go off and find and be his own Logan because, you see, he was given a life sentence too and he deserves to not have to worry about or look out for Adam the way that he does on his own volition.

This past September marked 15 years since Adam’s diagnosis of autism.  He will be 18 in January.  The worst years were between ages 3 and 4 years and between age 14 and now. There were 9 years where things were decent, maybe I could say more in control, happier, manageable perhaps is another word I could use … but it was never easy or simple and I know life is not simple or easy but I feel with autism, if you don’t look for your breaks, take your breaks and work towards breaking away from your child …this frigging puzzling condition will break your entire family.  I’ll be damned if I let that happen. I love my son but I love my other son and my husband too and I love myself and I will not let myself be sorry for Adam because he has autism. I am not going to try and blame his personality on his autism either because we all have a personality and at the end of the day we are who we are. The love in this family is what has kept us whole and it is with the strength of this love I will let Adam and the rest of us be free knowing we have done a fantastic job in getting him to adulthood by recognizing what needed to be done for his well being in the long run.  We could have given up and thrown our hands in the air when things were hard. We could have felt  sorry for ourselves. We could have wallowed in helplessness – but we didn’t. When people said he couldn’t we helped Adam become a person who could and while he is a whole lot better in the way he behaves at home, the things he says and does to intentionally irk the 3 of us … the way he treats us is unfair and that is why more than ever the plan is in motion to set him free and give him the space he wants and the space we need.

I hope for other parents with kids with autism, my honesty will set you free as well. Some people can smile and find everything their autistic child does is beautiful and wonderful and they when they talk they have such empathy for their child when the “raw autism” days take place. They live in an autism central atmosphere and the autism defines them.  My family is different.  We will not pretend that we are okay with what Adam does sometimes, especially since we have learned to separate asshole behavior from autistic behavior. We will not pretend that living the way we have had to was easy or cool. We will not sob on your shoulder but know our shoulders are broad and we have managed our lives without disrupting anyone else’s. I hope my honesty will let parents know that it is okay to feel anger, sadness, resentment etc because they are very normal and real feelings and reactions and if you feel them and not smother them, if you talk about them, you can move on with a clear head and heart the next day. No one signs up for this. No one deserves the life you have when you have to deal with the issues of these children/ teens/ adults. I think if you feel pissed off, get it off your chest with a therapist or a friend or in a group and to hell with the people who may judge you.  I’d like to see them live 20 minutes of the lives we have.  It’s okay to feel however you feel but do have an outlet so that you can keep it together when your child has a day that can push you over the edge. It’s okay to leave your child with a sitter and go out for 3 hours, 10 hours or for a day or 2 and not call every hour to check in. If something goes wrong, someone will let you know but most importantly, it is imperative to have an adult living plan for your child because he is not going to be a child forever and like any other child he may damn well want his independence from you.  If that is crystal clear to you as it has been to us…let him or her go.

I have done a lot to enhance my son – I remember running alongside his bike bent at my waist while pushing his feet onto the pedals for weeks until he figured out what his body was supposed to do on a bike. The day he did he happily and proudly rode off on his own.

I remember pre-ordering our food for months at a restaurant when he was little and sensitive to everything outside of our house. After 7 months he was able to go to a restaurant and wait to be served and could tolerate the ambiance. My husband taught him to skate in hockey skates instead of the double bladed skates everyone thought would be easier for him.  Today, Adam is a highly decorated speed skater, skating on long sharp blades at high speed. His father figured running would be an outlet for him to use up all that excessive energy he constantly has.  Adam has trouble keeping still so Tom taught him to run in marathons so well that he left his bather behind in his dust and today he is a decorated track athlete. We have done our best to make him successful  – not because he wins events but because all these things have made him happy.  Adam skates and runs and drums and sings with a big smile on his face. He is done with us now. We get that.  Have no fear son, you will be living your dream very soon and we will, God willing be living ours because none of us, especially you, ever signed up for this.

The Meaning of the Word “Special” in the Special Olympic Games

“The genesis of Special Olympics was a summer day camp that Sargent and Eunice Shriver started in the backyard of their Maryland home. In July 1968, the world witnessed the first International Special Olympics Games at Soldier Field in Chicago.” (Special Olympics Website)

red-ftr-logo special o logo

When my son’s speed skating coach put our son in his first Special Olympics event he was just 8 years old.  She told me she saw that he was capable of learning how to race and in time he could become a great competitor.  What I heard was that he was good enough to compete with people with special needs and that he would race in an easier category of games.  Dealing with Adam’s diagnosis was the biggest blow to my husband and me as parents, hearing that he was good enough to compete in the Special Olympics was not as heavy a blow but it was confirmation that he was different and that there was a place for different.  I would be lying if I said it didn’t bother us a little. What I couldn’t see at the time was that having a place for different was very good thing. What I did learn, was that different, over time, could learn to perfect a skill and that natural talent could be turned into something fulfilling, something to be proud of and something remarkable that amazes us every time. Thankfully, in spite of ourselves and those initial unfounded feelings  we decided to take a shot at having him join the Special Olympic Program and compete in the games.

His first race day came and we suited him up, explained over and over again what was going to happen and what he had to do.  We told him that his grandparents and little brother and we were there to cheer him on and all he had to do was skate.  He started to fuss and cry and instantly my husband, being the caring and protective father that he has always been was ready to pull him out and take him home.

first race

“He’s not ready, ” he said.

“He has to get ready sometime.  We have to at least try one race,”  I urged.  My husband shrugged and unwillingly joined his parents and our younger boy in the stands.

“Adam, are you scared?  Are you a little nervous?” I asked him.  He stopped fussing and looked at me with his glassy, big, brown eyes and gave me a slight nod.

“How about you wear your bike helmet instead of the racing helmet they gave you?  Would that feel better?”  Another slight nod.

I swapped the helmets and kissed him on the cheek.  “Now listen.  You are fine.  This is the ice you skate on every week. Just skate and keep going until someone tells you to stop, ok?”

He didn’t nod or say anything but I could tell he was more comfortable.  I remember that first race like it was yesterday and it still makes me smile.  It was the birth of the chants “Go Adam Go!”  “Keep going buddy!” and “Skate hard, skate fast Ad!”  Our little autistic boy skated right to the finish line and crossed in first place in his first race.  His coach ran up to us beaming and said “He did it! And he’s only 8!”  Race after race that day, Adam crossed the finish line in the top three and got the taste for competition and fun.  It was on that day that our family learned the meaning of the word special in Special Olympics and the warm feeling it created inside me and it was a feeling that has stayed with me for 9 years and will stay with me forever.

“Emanating from the mission, the ultimate goal of Special Olympics is to help persons with intellectual disabilities participate as productive and respected members of society at large, by offering them a fair opportunity to develop and demonstrate their skills and talents through sports training and competition, and by increasing the public’s awareness of their capabilities and needs.  The Founding Principles support this goal by emphasizing that people with intellectual disabilities can enjoy, learn and benefit from participation in individual and team sports, underpinned by consistent training and by competition opportunities for all levels of ability.    According to the Principles, Special Olympics must transcend all boundaries of race, gender, religion, national origin, geography, and political philosophy.  They also state that every person with an intellectual disability should have the opportunity to participate and be challenged to achieve their full potential, with the focus at community level to reach the greatest number of athletes, strengthen their families and create an environment of equality, respect and acceptance.” (Special Olympics Website)

The Special Olympics events are not about competing with a disability or a challenge.  It is about competing in spite of them.  It’s not about competing at an easier level but about competing at your highest level and over the years I have seen athletes in division 4 persist and find themselves competing at a division 3 level the following season, each season inching closer to a more challenging division because when athletes with challenges are encouraged to achieve their personal best, the sky is their limit. The Special Olympics Program is about inclusion, expectations, goals and the freedom to participate at one’s best in a sport (or sports) one loves.  It is about achievement, pride, sportsmanship, freedom and most importantly it is about fun.  The Special Olympics is about teaching anyone willing to learn that given enough patience and time, everyone can achieve greatness and everything is possible when an opportunity is given, when words of encouragement are spoken and when there is enough support. It reminds parents and coaches and volunteers that there is so much good and so much talent and joy in each of these athletes and it makes us dig deeper within ourselves to do right by them by finding the energy  and time and love to give them the training and support they crave.

Our son Adam found his freedom in sport.  It is a release valve for him from all the pressure he must feel when he has to cope with the daily goings-on in his world. It has allowed him to be a part of not only the Special Olympics team but a part of his speed skating club and high school track team. The inclusion and sense of purpose Adam gets from his sports have given him so many positives to draw on in his life. Before he joined the Special Olympics program, I did not know if Adam would find his niche in the world. We never thought he would find his passion and because he plunged into a deeply private, puzzling and exclusive world his father and I didn’t think we would be able to find a life line strong enough to draw him back to us.  Now here we are, proudly watching a young man who used to be such a lost little boy cross numerous finish lines, with incredible times and speed, breaking records and standing on podiums proudly wearing his hard earned medals. What a long, winding road it has been! What a great journey that is going to keep going way past our lifetime as parents.

The Special Olympics has given him the opportunity to make friends, to travel independently of us and the opportunity to perform at his very best.

 

Our boy is FAST and now that he is older, his ability means something to him and I believe he is very proud of himself.  He is okay if he doesn’t win (well, sometimes he’s a little frustrated with himself when he loses) but he certainly understands and appreciates participation as much as he appreciates being on the podium. Adam has represented his club, region, and province in speed skating and for the first time he represented his province in track and field.

These games are a pleasure to watch.  They are as competitive, fast and exciting as any competitive games that exist and the athletes are well trained and possess the physical attributes to compete.  It is fulfilling to watch people of all ages, sizes, shapes and challenges come together in the spirit of friendship and competition.  There are smiles before, during and after each event as they race before their friends and families who cheer loudly and proudly.  Expectations are high and every effort is applauded.  I have never been to an event more encouraging than a Special Olympics event. I am so grateful for these games for what it has given to my son, his fellow athletes and families like ours. Adam is going to compete for years to come and he is going to experience that joy and accomplishment every time in both the summer and winter games.

 

blog 10     provincials with dad

To me, the word “special” in Special Olympics does not mean disadvantaged in any way.  It is more of a description of the feeling you get when you attend these games.  There is a warmth and feeling of goodness at the venue and there is an aura of happiness because win or lose, these athletes know they have worked hard, have overcome many challenges and have given their best effort to get to the games and their sense of pride and confidence is so high it creates an infectious feeling of goodness.  I encourage everyone to visit the games when they are in your area and see for yourself why it is so important to keep these games alive year after year. See what the games can do for you.

http://www.specialolympics.org/RegionsPages/content.aspx?id=40725

Go watch. Go cheer.  Go be amazed at the Special Olympics.

I’m not the only parent that feels this way. Read more about the effect the Special Olympics has had on the lives of athletes and families worldwide.

http://www.specialolympics.org/SimpleStories/SimpleStory.aspx?id=42527

See what the games can do for athletes with Intellectual challenges all over the world.

http://www.specialolympics.org/RegionsPages/content.aspx?id=39851

http://www.specialolympics.org/Responsive/Ashley-Setting_Goals.aspx?src=homestorylist

http://www.specialolympics.org/Responsive/Revolution_for_Unity.aspx?src=HomeStoryList

As parents and care givers we have fear.  Can a person we know with an intellectual challenge learn a sport?  Will they have difficult behaviors borne out of frustration during the learning process? Are they coach-able?  There can be so many questions and technically they all originate in fear – our fear.   Then there are parents and caregivers who have given up and honestly, that is understandable. Raising and caring for someone with special needs is exhausting and complicated but wouldn’t it be better for everyone concerned if the person with the challenges has an outlet…has something to look forward to…has something new to learn with goals to set and achieve?  Wouldn’t it be great if they were able to leave the house and travel with their team for a few days?  Wouldn’t it be rewarding for everyone involved to see the person soar?  The answer to all those questions is YES.

Don’t be afraid. Here’s how to get someone with intellectual challenges involved in the Special Olympics.

http://www.specialolympics.org/Common/Special_Olympics_A_to_Z.aspx?aspxerrorpath=/Sections/Who_We_Are/Our_Athletes_2.aspx

Thank you Sargent and Eunice Shriver.  You have changed the lives of countless intellectually challenged persons and their families for the better over the years and for years to come. As Adam’s mother, I am thankful you did.

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