OK Ontario – It is election time!

We here in ONTARIO are just a few days away from another provincial election. Maybe I am cynical (OK…I admit yes..I AM cynical) but I find myself wondering – is there any point? What real difference will this election make? Does ANY political party in this province CARE about real issues? Would ANY political party in this province do the RIGHT THING? For that matter, does any political party in our COUNTRY care about their responsibility, or their ability, to assist the most needy people in our society here in Canada? The homeless, elderly, sick, poor, or disabled? At election time there might be some promises that are later unfulfilled. Because the responsibility to serve the least among us is expensive, challenging, and not politically supported.

BUT that responsibility, that ability, in my mind, is a fundamental purpose of government. One of the key reasons governments exist I believe is to ensure the safety and well being of vulnerable citizens. In our times today, I suspect that responsibility and capacity has been overshadowed, overlooked. It has been the victim of the numbers game of getting re-elected, the victim of the drive for power. It has been lost to the lawyers, lost in the fear of legal liability and its associated costs. Our politicians today have had their true vision, their true strength obscured by bling. So what can we do, as little guys, as advocates of a more traditional and less monetary, self-seeking set of values? How can we make a difference to our own vulnerable?

I am not sure we can. But here is what I suggest: When your MPP-would-be knocks on your door – ask him or her, what would he/she do, if they discovered they had a child who was always going to be cognitively 2 years old and would never be independent. What would they do, with their infant, child or teen, if they had to provide 24/7 caregiving, but received little or no funding, support, assistance, programs or even information where to get them because of disjointed service provision? What if, even if they could find funding or programs, they could not access them, because of an arbitrary definition, because of a wait list, because they lived in a region for which assistance was over subscribed, because they had equity in their home? Mortgage the house? Fine but what if they had other children who wanted to go to university, if they had no pension plan (they need to stretch the imagination here – pretend they are not a public servant) and their paltry savings for their future had to be withdrawn to fund expensive private intervention programs not covered by any provincial or private medical plan? What would they do? What would they do if they had to return home at 2:30 in the afternoon to provide caregiving to a disabled child? Because their child’s school day is done at 2:30pm, and there are no after-school programs available/willing to take him/her because of the severity of disability? No funding either? What if they have no family to help out? How would they be able to function as YOUR MPP? Because it could happen to anybody. So why elect somebody who is unable to provide answers for that situation?

Ask your MPP to consider the future. We all want a home, for ourselves, for our children. But for our special needs kids – the wait list is, around here, 20 years (once they turn 18) So under this scenario the child will be 38 when he/she MIGHT get a place to call their own. In all liklihood it will take longer, potentially years longer. A little math tells you that, best case scenario, you will be 76 when you finally have an empty next. Or older. And as for your finances, all this time, from when your child was 18 to present, for 20 years or more, the disability pension of slightly over 800/month only covered only 8 days per month of your adult day programs (mostly private at $100/day). Tell your candidate that he/she is a hero, for having faced challenges that few understand, but who now, in final years, is a martyr facing poverty! What would he/she do as MPP? Would she help herself or other like her?

In this province today nobody realizes that they have no social safety net until they need one. We need to tell our elected officials that such things are considered basic rights, from our taxes, from our history as a compassionate society. We don’t care about e-crap-services, orange helicopters, corrupted contracts with provisions that could potentially affect negatively our taxpayers. WE WANT TO TAKE CARE OF OUR OWN here in this province. If you agree with me – then ask your MPP-would-be – where they stand on the issue of care for our vulnerable society members.

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Swimming Lessons with Autism

We enrolled N in swimming lessons for the first time when N was 4. The community swimming program for special needs kids was called “Aquadapt”. As I saw it at the time, it was just another thing N could not do, reminding me that on a capability scale of 1-100, N was at 1. In time I realized those swimming lessons were mostly “aqua;” but not much “adapt”. Now, years later and looking back, I have a greater context for Aquadapt and other similar well-intended programs.

“Aquadapt” is a community “one-to-one” swimming lesson for which the participant’s family pays a premium. In our town I soon discovered that these spots were highly coveted and were quickly snapped up. The first time I tried, I was unable to register N for swimming lessons 2 seasons away, because I had waited until 2 weeks after registration opened. I was informed by the Town that I needed to register on-line, not just on the day registration opened, but at the precise time it opened, which was 8:00am. This would give me at least a possibility of securing an “Aquadapt” spot for my son. Of course the usual caveat applied: no guarantees!

OK, sigh, I got the math! It was Call of Duty + Mortal Combat = On-Line Registration. Armed and dangerous, I was ready for the next session, on the date and time that registration opened. When that moment arrived, I was there, at the computer, bright and early, fingers poised for the anticipated cyber-battle. I had already determined what sessions I could do. I had the necessary IDs and PASSWORDS. I knew the answers to the security questions. I had the Parks and Rec book beside me, with desired session codes highlighted. I had my credit card ready. I was ready for anything.

Wham! Bam! I got a spot! My second choice but who cares? I was not surprised to discover that some had managed to beat me to the punch. Anyway it did not matter, because N was “IN”.

It turns out that “Aquadapt” is nothing more than “normal-kid” swimming levels done one-to-one. It was AquaQuest 1, a basic introduction to swimming. Some of the requirements of this level, that I can recall: putting head under water, blowing bubbles, floating, jumping to the instructor, using a kick board, and arm movements for treading water.

While some moms around me were enjoying a break, I sat in the bleachers beside the pool, watching with great anxiety because my son was non-verbal and not yet toilet trained. I had to carefully watch for the cryptic signals of impending poop, to avoid the real possibility of an accident, one that could potentially result in a “fouling,” and closure of the pool. Thankfully there was no incident.

Our first session ended without success: N had failed Aquaquest 1. To be honest, I was surprised, I thought he had actually been successful, for I had seen him do all the things the level required at some time during the course. But that was not relevant. His instructor told me the reason he failed: he would not put his head under the water. “Wait” I cried, “he jumps off the side of the pool all the time, and he goes under!” I was told “that does not count – he does not put his head under the water when instructed to by the instructor.” My heart sank, for I knew that even if he understood the instruction, he almost certainly would not comply, because he would not see the purpose of the request. Why would any well meaning person ask another to put their head under water? Why would anyone in their right mind do that, when asked to?

We tried two other times with “Aquadapt” and after the third registration war and subsequent failure to pass Aquaquest 1, I had to re-evaluate.

What was important to me was that N learned enough swimming skills that if he fell into the water, he could get to the side. I realized that the community swim programs had different objectives. So, either I would teach him, or he would teach himself.

A few years later when N was about 7 years old, we took him on a family vacation where there was a heated swimming pool with a depth no greater than 5ft. Each and every, day for 2 weeks, we spent hours at the pool and N explored the water freely under our supervision. For the entire time, I encouraged him, I gradually let him take risks and try out the deep end. I modeled swimming, I cued him and when necessary, rescued him while staying calm. It was really important to me that I did not show fear, that he did not have fear, because fear could prevent him from reaching safety. And after 2 weeks N had figured out on his own how to swim. It was such a wonderful thing for me to watch! He had his quasi-back float, with sculling hands and fluttering feet. Then he had the special needs dog paddle with its “kick only when absolutely necessary” action. I was overjoyed! I do not care about the crawl, or the breast stroke, or the butterfly or backstroke! Or blowing bubbles or putting head under water on demand. My son can get to the side!

So what is the context of this story, that came to me after years and years of community integration programs? “Aquadapt” was not something my son failed at – it was Aquadapt that was the failure. While some were served, it failed the least among us. I now see that when developmental services are at the community level, and integration is the goal, those services will be aimed at the more numerous, higher functioning kids. For those few who are most disabled, services either won’t exist, or they will be ridiculously expensive.

Clearly part of the reason is due to rational economics: where there are a small number of individuals needing services, those services will be unprofitable, if inexpensive. Sadly, funding does not take into account the level of disability. But there is a more serious aspect to this problem: it is the knowledge gap, the community does not understand how to integrate those individuals whose experience of life is so very different. Nobody seems to realize, when we put kids like my son into programs for “normal” kids, they are being set up for failure. One to one – it does not matter, not for the more disabled ones. The more severely developmentally disabled individuals need modified goals and activities, goals and activities that are relevant to them. They need structure. And they need to be able to be successful, not on the community’s terms, but on their own terms.

This context comes from many experiences with community programming over the years. Not just swimming lessons – special preschool and daycare programs, various camps, early intervention classes, speech & language sessions, and so on. We have had some wonderful, kind, amazing people who have worked with and loved dearly our son N, in all these programs, and we are truly grateful for the terrific job they have done given the constraints they have faced. It is not their fault – this is a world about money and legal liability. As for N’s swimming lessons, I guess they were really my swimming lessons. I learned what it would take for me to keep my head above the water in my lifewithautistickid.

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Easter with Autism

About 17 years ago, Easter Bunny passed me the hat, and the basket of eggs. I have to say, it was lots of fun, but It was not always easy, staying up late, finding good hiding places that weren’t TOO good, not getting busted running all around the house dropping things in the middle of the night.

This year, I have been retired. The Easter Bunny job has been outsourced, so I understand. Maybe it is part of the trend to move everything to Mexico? Maybe someday it won’t be just about delivery costs. Anyways, this year, the only eggs I will deliver will be scrambled on toast.

Maybe that is just as well. Easter has had some challenges in the past…..Easter with autism, that is.

When I had 3 little boys, Easter morning began early, TOO early, in my opinion. Each boy had a white basket to collect the eggs, which I gave to them in the morning. However the oldest 2 boys were highly competitive. Often they would get up in the middle of the night and case out the locations of the eggs. I would hear them, I even knew who was up snooping around. As far as I can remember they never met each other at the task of cheating.

N, my youngest son, was oblivious to the entire occasion: He always awoke annoyed Easter morning at having to get up early, and not of his own will. He was always surprised to find even a few hidden candies, and the wonderful experience of eating them right then and there, FAR outweighed the benefit of looking for more, which, as far as he knew, did not exist.

I always felt a bit sorry for N, while watching his brothers fill their baskets, while watching N oblivious, in his own world.and collecting nothing. I could help him, for I had insider knowledge, After all, strong> I, was Easter Bunny. I would try to direct his attention to the foil-wrapped treats before his brothers could descend upon the room and scoop them up. I would often put them in his basket for him. Still, N did not get it: even with my help he would collect no more than a dozen eggs, at the very most, and with constant prompting. It was that heartbreaking lack of understanding, that the treats in the basket could be eaten later, that there were more treats hidden and yet accessible.

So this Easter, when the older two boys agreed that they did not want to bother hunting for Easter eggs, I did not argue a case for N. Or me. I selfishly did not want to give away my rabbit ears. But I also knew that for our very own “least among us” son who is so precious, there was only the bird in the hand, and no eggs in the bush.

Wishing all my special followers, a very Happy Easter.

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Autism Appearances……are Deceiving

There are 2 stories that I want to tell. About appearances, and how they are not necessarily reflective of reality. One is about autism, the other is not. In both cases the families live on the edge, at the extreme end of a theoretical bell curve that defines a normal life.

I want to tell these two stories because I worry about judgement. I write this blog because I want to spread autism understanding, I want to go one step beyond awareness. Yet there is a real risk involved. Because we all see the world through our own uniquely myopic lens; and for each of us, our lens is truth. We think we know best, when in fact, we do not. I am talking about how autism appearances… are deceiving. I am talking about judgement.

My first story is about autism.

Once, at an autism parent support group, a parent told me about the troubles she was having with her teenage son, who had uncontrolled fits of aggression. She was forced to lock him in his room at times, to protect him, and herself, and his siblings. She tried to make it a “teachable moment” for him by telling him: “first be quiet, then come out”. Her son had difficulty calming himself and regulating his emotions, which is not unusual with autism. Also typical of a teenager, he rebelled from time to time against parental control.

On two occasions he rebelled against his confinement to his bedroom by opening his second floor bedroom window and climbing down and out of the house.

On the first occasion the window was unlocked, and he slipped out and down into the bushes. So the family locked the window. On the second occasion, the family was stunned to discover that he was able to open the window lock. Miraculously, he was uninjured, at either descent from the second floor bedroom. In both cases the family was immediately aware of his act and immediately brought him back into the house.

A neighbor who did not know the family, who had heard some commotion, who had seen the child climbing out of the bedroom window, called the Children’s Aid. The neighbor meant well but clearly did not understand the situation. She heard a boy screaming in his room, she saw a boy attempting to escape unsafely through a second floor window. The neighbor may well not have known he was autistic: nor did she have any understanding of autism, and in no way could not relate to the challenges that the family next door faced. When the Children’s Aid showed up at her house, the mom was humiliated and embarrassed. She went on to explain to our group the lengthy process she was forced to go through to convince Children’s Aid that she was a capable parent, and that the family had taken every precaution to protect their son. I wondered at the many families who could not afford the high level of security services they had already installed. It truly frightened me, how vulnerable a family could be, how a loving home could be inaccurately perceived as not providing for their child’s needs. Autism appearances are deceiving.

My second story is about poverty. This was a story I was told years ago by my grandmother, about a family that lived down the road from the family farm in rural Quebec. They had 13 kids in a small house without any conveniences. They were very poor, so poor that there were only 3 or 4 pairs of shoes for the children, so at any given time only 3 or 4 kids would show up at school, on a rotation basis. It was not long before the community had figured out the connection between poverty, shoes and attendance at the school.

Several charitable groups tried to help the family out. They had a common and admirable goal, to see the children properly loved and cared for. The first group that intervened gave the family money to buy shoes for the kids. But the father used the money to buy beer and cigarettes. Still, 3 or 4 children whose turn it was to wear the shoes, came to school.

The second charitable group bought shoes for the children. But the father sold the shoes and used the money to buy beer and cigarettes. Again, only 3 or 4 kids at any given time would show up for school.

Finally a third group decided that the children lived in neglect and needed to be rescued. So the 13 children were removed from the family home and dispersed to kind, well meaning families in the local town.

To everyone’s amazement, something surprising happened: one by one, the children returned home. They left their comfortable, warm and well appointed homes with plenty of food and clothing, and even properly fitted shoes, for their crowded, squalid, tiny rural home. Why? My grandmother told me why: because that was home, and those children wanted the life they had known, and they wanted to be with their real family. They slept best with 6 siblings in a bed. They did not like having their own bed. And their dad, who was judged by the community as a lazy smoking good-for-nothing drunk, was still their beloved dad. The trappings of life could not take the place of their reality, no matter how foreign or undesirable that reality might seem to the majority of us.

I remembered this story, told to me many years ago, after hearing that story told by a mom in my autism support group. While the circumstances were not at all alike, the issue of judgement was common. It reminded me, if I see something or read something I do not understand, to consider perhaps I must wait until it is my turn to wear the shoes and attend school. I hope that you are likewise reminded.

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Lost….Code ADAM…..and Found

It has not happened, in years, but it did again today. I lost N at the Superstore. I was selecting a flavour of ice cream in the freezer aisle, and I did not notice that he had wandered off. My attention was diverted for less than a minute. But that was long enough for serious trouble to arise.

I abandoned my cart and headed in the direction where he had been only moments before. At the end of the aisle, where the row of cash registers was – there was no sign of N. I checked the aisles to the left and right of the freezer aisle. No sign of N. I checked the other end of the freezer aisle, which I call the meat row, left and right. No sign of N.

OK – he cannot be far. Where would he go? My instinct was the produce department where the food is unwrapped and easily accessible. So I walked down the meat row to the fruits and vegetables section. I stood there for at least a minute, maybe longer, but there was no sign of N.

I walked down the row of cash registers, checking each aisle. OMG N had vanished! It had been about 5 minutes that I had been looking and I was starting to panic. My greatest fear is that he leaves the store, wanders out into the parking lot into the path of stressed store patrons jockeying mercilessly for a parking spot

This had never happened before, where I could not find him. I asked two store employees if they had seen a boy about my size in a red jacket, with a black hat and boots. One of the young men had noticed him by the milk and juice, maybe 5 minutes ago. He asked me if I required assistance to find him and I said, “yes”. I went with him to meet one of the front line managers of the store. I told her that I had lost my non-verbal autistic kid, age 12, and I gave her a general description of him. She said to me “I am going to call a CODE ADAM, this will alert all store employees to be on the lookout for your son and watch the doors”. The call went out moments later on the PA system. I had heard that term before, CODE ADAM, but I did not know what it meant.

Today I learned a few things. Not just the meaning of CODE ADAM, I also learned that there is a network of employees in the store that communicate with each other via hand-held device. There were instantly a dozen employees looking for N, and within minutes he was found, in the towel department! I was stunned!! HUH? The TOWEL department!! There isn’t even anything to eat there. The employee who accompanied me took me to the towel department and enroute was updated of his location in aisle 12, the freezer department where I originally lost him. We headed there and found him, holding the hand of an employee, walking toward the front of the store.

I gave him my very best “cross” face but I could see that he did not understand what was happening. He did not know he was lost. His face was slightly red, which told me that he knew he had done something wrong but was not sure what. I thanked the employees. I told him, “stay with mommy” which is a phrase he knows (but clearly may not obey). But I was too tired to shop any more, and so we went to the checkout.

I got about half of my grocery list accomplished, luckily enough to prepare a supper for the family. Another thing I learned – I realized that the store is too crowded on Saturday for N. I believe N went to the towel department to escape the overstimulation. Normally he likes to go to the grocery store. Normally he follows me around.

I sense a growing desire for independence, without understanding, in him. Tonight I am simply glad to be home and have him home and we are all safe.

Posted in Coping, sort of, Uncategorized | Tagged , , , , , , , , , | 3 Comments

Personal Hygiene tips and tricks for parenting severely autistic boys

If you have a kid with autism, especially on the moderate – severe end of the spectrum, you probably have experienced difficulties teaching your child basic personal hygiene.

I believe that the challenge relates to relevance: if something is not relevant, it is difficult for somebody to attend to, and so it is difficult for somebody to learn. My autistic son does not see the purpose of personal hygiene: hair and teeth brushing, washing hands, washing body, putting on deodorant – for him, WHO CARES? It does not matter to him what others see, smell, think. What matters is his own unique sensory experiences.

I think this is not unusual for most boys, but for “normal” boys, at some point in the maturation process, the social implications of poor personal hygiene became undesirable. With my two “normal” guys I had the luxury of hiding my parenting fails behind the passage of time. I don’t have that luxury with my autistic son.

For my son and many autistic individuals, we rely upon rote and routine to teach many tasks. Rote and routine activities are more predictable, comfortable, and comprehensible than new or surprise activities. If you have problems sensory processing, new situations can be too much work. In effect, familiarity makes something relevant. For the caregiver, however, it can be a lot of work to constantly and consistently work the routine, and repeat tasks in step-by-step detail, over and over. Especially when you have other children who need mom’s attention. Fortunately I have had lots of help from the schools. And I have managed to find a few creative motivators of my own to help get a hygiene job done.

I share what worked for us, and a few things that did not work.

    Toilet Hygiene

Some of the textbook personal hygiene techniques that were suggested to me by well-meaning professionals just did not work. As an example, the classic “sink the Cheerios” toilet training technique was a spectacular failure. For N sink-the-Cheerios made no sense. Cheerios? YUM, why not reach in and eat them, with or without pee. This technique of teaching toileting only works if a child understands and enjoys the concept of playing a game and is able to understand that while we eat from bowls, we don’t eat from toilet bowls. Toilet success came after many years of constant repetition and referral to a visual strip showing step-by-step what was expected of him when he had to go. To make things easier, we worked on SITTING on the toilet for both number 1 and 2. We still have visual aids in the bathrooms, to remind him of all the steps, because sometimes he “forgets” to do the steps he does not like, such as wiping or hand washing. Our guests do claim to appreciate the assistance of the graphic autism bathroom decor.

Toilet How-to

    Bathing

If you have read my previous posts you know that for years we struggled at bathtime. I am happy to report improvement. N still stands in the tub, and refuses to go in the shower. He still stands at the most hard-to-reach location within the tub. He still does not wash himself. But he willingly cooperates. This is a big improvement. I have incorporated bathing into the routine of the evening. N always requests the evening routine by suggesting verbally a possible activity – whatever he might like to do or what comes to mind. I know that means “whats happening next?” My visual now verbal schedule has 2 constants every night: first cook, then bath. If there is an outing, it goes after cook or bath as appropriate. He may not understand why he is getting a bath, but he likes the consistency. I have found a creative motivator: he loves mom’s special attention. He loves it so much that my current challenge is to get him out of the tub when the bath is over. I have to use another creative motivator: to signal the bath is done (and give him reason to exit the tub) I sing a song. It is not my singing that he wishes to stop, it is actually the song itself and its related actions: “A cold wind blows when it is time to get out of the tub,” sung to the tune of “The Beverly Hillbillies” theme song. While I sing it I wave a towel in his general direction, to make a cold wind. As he stands wet in the tub after his bath, if the cold wind keeps up for too long, he gets out.

First Cook then Bath

    Hair Cuts

Because N did not understand the purposes of a haircut, going to the barber initially was an indescribable torture, for him, for his family, and for the barber. He would scream and cry at being caped, restrained for no apparent reason, and for being attacked around his head. Water sprayed and scissors chopped about his face elicited the correct “flight or fight” response. And it was heartbreaking, when we would return to the barber, to reinforce a basically positive outcome, to see the look of abject dismay on the barber’s face. “OH NO…….not THEM…AGAIN?!!!”

We quickly decided this was not a battle we wanted. We tried repeatedly, to adapt N to the haircut. A short term solution was to bring with us, distraction. What worked well were thick, round, slow dissolving lollipops, like the kind you find at Canadian Tire check-out. We found it necessary to bring 2 lollipops, one for each hand, so that there are no hands available to engage in self-defence. Also, instructions to the barber that speed was more important than quality did help alleviate barber stress. Eventually we decided to adapt the haircut to N. We brought the process in house. I had watched those barbers very carefully before purchasing a men’s grooming kit. Now all my boys are cut at home. They all get buzz cuts. I no longer use a visual schedule: I place a chair in the middle of the bathroom and I announce to all – “barber shop is open!” N knows that hair cuts are coming. N can see his brothers also being attacked around the head. He sees that they are unafraid and unharmed. We praise N for his cut and I make sure he gets lots of “Moms Special Attention”.

    Deodorant

Something that smells great can be (a) rubbed in your arm pits; (b) eaten. Our issue was that N correctly chose (b). My dad is in Long Term Care, and I remember him telling me that one morning after a visit from N and I, his caregiver who was preparing him for the day remarked “Brian, your Speedstick has teeth marks in it!”.

We have not been terribly successful in dealing effectively with the issue of eating things that smell good but are not edible. So, we decided to teach him to use unscented roll-on. And we have a very simple visual schedule for the morning routine consisting of 5 pictures: “get dressed”, “breakfast”, “armpits”, “teeth”, and ” school bus”. Each morning I verbally prompt him “do your pits” while I am doing mine. He has his easily accessible “Dry Idea” unscented roll on (The rest of the family have their preferred deodorant carefully hidden somewhere to avoid being consumed). Although he does not really understand why he rubs that stuff in his armpits, he cooperates, because it is routine and familiar.

Nick am

    Nail cutting

Like hair cutting, nail cutting was viewed by N as a kind of attack that elicited primitive self-defense mechanisms. What I found worked best were large nail clippers, as opposed to small clippers or nail scissors. Toenails were always easier, as long as the hands could be occupied with something to provide visual stimulation. Hands were a bigger challenge, and they were also always the priority, as those nails did plenty of scratching. I had to find a sufficiently interesting VISUAL distraction, for one hand. I was fortunate, N had no hand preferences, which made it possible to cut nails on both hands.

Now that he has had his nails cut so many times, he is cooperative, and comfortable, with the routine.

Nail Cutting

    Hair Brushing

Both N and the dog will run if they see me coming toward them with a brush in hand. For N, who dislikes the sensation of the brush, the obvious solution was to cut his hair short enough so that brushing was not necessary. Forget routine and rote learning, I need to pick my battles. The buzz cut – truly, a wonderful thing! For the dog however, we are still trying to figure out how to best get her looking her best.

Will rote and repetition tempered by creativity eventually result in independence? I am cautiously optimistic, but the road ahead is long and the obstacles are ever changing. Tune in later for an update on tooth brushing, dentist disasters and facial hair shaving.

Posted in Autism Challenges, Autism Lessons, Helpful, Humour, Uncategorized | Tagged , , , , , , , , , , , , , | 6 Comments

Autism Enlightenment… while Shopping!

Just before Christmas N and I had gone to Walmart to buy a few last minute gifts. We were waiting, in a very busy store, in a very long line. This is the very stuff of autism shopping nightmares of years gone by. In similar circumstances, not long ago, N would bolt, to get away from the sensory overload – too much sound, too many things to see, too many smells of people and food, too much heat from winter clothes while waiting. Not long ago I would have had to abandon my cart full of items, to find him and coax him out from whatever rack he was hiding under, and get him safely home.

Now N has found a few ways to cope. He has a “comfort-de-jour” for the shopping experience, a comfort that changes from time to time. At present, to comfort himself N takes my head between his hands and gently pushes it down, and then he rubs his face in my hair. When he does this he says “wheeawheeawheeawheeawhee!” I repeat the sound back to him to let him know that I hear him. After we do this a few times, we make eye contact and we both smile, and I say his nickname which is “noonoo”. He is communicating “you are here to make this OK for me” in his own language. He is saying “I love you” in his own words. I am telling him “yes” and “I love you back”.

That day at Walmart two women stood behind us in the line. They were watching us doing our strange face-in-hair thing. I was aware of their attention, but I was not mindful of it. Then one of them spoke to me: “I hope you know, that is an angel you have!” I was taken by surprise. It was an unusual comment in the circumstances – that a stranger could observe our weird interaction briefly, and make a very remarkable observation. I responded that yes he was, or so I believed, and I wished them both a Merry Christmas. But I did not brush her comments off.

Amazingly, a similar encounter occurred at the Superstore a few weeks later, shortly after Christmas. Again there was a long line and the poor cashier was trying to make a difficult customer happy. N was fine because he had mommy’s hair to mess up. Repeatedly, N took my head between his hands and gently pushed it down, and he rubbed his face in my hair while saying “wheeawheeawheeawheeawhee!” I repeated the sound back to him to let him know that I hear him. He is saying “you are here to make this OK for me” in his own language. He is saying “I love you” in his own words. I told him in response, “I love you back”.

Today it was really taking too long, the difficult customer was beset with issues. It was I who was having trouble. With my hair looking rebellious and punk-style due to N’s devotion, I turned around to make a sarcastic comment to the person behind me. Unexpectedly, before I could express my frustration, the lady spoke to me first, in broken English: “Do you know, you have an angel?” She gestured at N. Stunned, given the recent and similar Walmart encounter, I managed to smile, and I falteringly said “yes, I know.” Then, apologetically, I confessed to her. “I did not realize it for a long time!”

She continued without judgement and with a heavy accent that I could not place: “you can see it in his eyes that he is an angel. You chose each other! You must be very strong, very brave, to choose an angel”. She smiled at me with a look of deep respect on her face.

I was taken off guard. That was an idea that never occurred to me. In spite of my belief that our spirits guide our destinies. We CHOSE each other? We chose EACH OTHER. Therefore I chose HIM? Did I choose autism?

This may sound harsh to you, that I would feel a kind of shock, to the supposition that I would choose my own child. It is because that I always wanted to do something important, and I believed that his needs prevented me from achieving my potential. The thought that he is an angel had occurred to me. My son, who cannot speak, who spins whatever is in his hand, who gets stuck under warehouse ceiling fans, who stims on his mom’s hair: he is a sweet innocent soul without the desires or cares of this world. He only wants to see, hear, touch, smell, feel what it is to be alive. Preferably one sense at a time. The shock and disbelief I was feeling, it was because at that moment it occurred to me, that maybe this actually was what I always wanted. To love and care for a very vulnerable person is something important. Maybe the very most important thing I could do.

“I do not know why he chose me” I responded, as my face flushed. But she insisted, “you chose him, you are very strong!”

Now quite red-faced, feeling all at once shame, for my lack of insight, and embarrassed at her praise, I think I made some feeble attempt at humour in response. And I turned my attention to N, who was dancing from foot to foot, teetering in and out of the personal space of the man in front of us, whose reaction was more typical. How the table has turned, when there is comfort in that.

I am still thinking about the similar, insightful words spoken by two different strangers in two different stores. Is it because it is something I want to hear, that my son is an angel? Or is it because there is a moment of truth for me personally, something about my own self that I have overlooked out of vanity?

Posted in Autism Lessons, Inspiration, Joys, Nicholas' Story | Tagged , , , , , , , | Leave a comment

Back to School – with Autistickid

Monday, January 6, 2014. The weather forecast for today – 15-25cm of snow. Last night my two older sons were eager with anticipation of a snow day, an extention of the 2 week Christmas holiday that they had just enjoyed. They would have loved to miss another day of school. But my youngest autistic son N was excited, not for a snow day, but for the impending return to school! Tomorrow the little bus would come and his day would be what it should be. He was up at 5:00 am and full of anticipation of an enjoyable day.

Yesterday at special needs trampoline, we, the moms of 4 special needs boys, laughed at the excitement we felt because our kids would be back on their routine! You think you were glad? You have NO IDEA! We laughed at how most parents of normal kids would not understand. We laughed at how some of the things we laughed at, shocked the parents of normal kids.

Routine is so important to those who have trouble processing sensory inputs. Routine allows them to organize their world and cope. For some kids integration, which includes the normal school routine, involves taking something away that they need. Every year for the past 12 years we have struggled as a family to get through the Christmas Break. Yes, it gets easier each year. Yes, this year was the best ever, for N is maturing, and coping, and to the best of his ability, understanding. But there is no question in my mind, N thrives when he is in a routine. N thrives in school, especially in his current placement, in a special needs classroom. There is no “one-size-fits-all” for special children. For my son – we need structure. We need sameness and routine.

I share with you the joy of my son upon his return to school today, through the pictures below.

Back to school
january 2013 077
january 2013 073

Posted in Joys, OMG, Reflective | 1 Comment

Christmas from the eyes of autism

Our house Christmas Eve

Our house Christmas Eve

I received this letter a few days ago. It is Christmas from the perspective of a child with autism. I felt when reading it that if my son could speak, or write, this is what he would say.

Dear Family and Friends,

I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful.

Sometimes I may seem rude and abrupt, but it is only because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry. Others are whizzes in math (Albert Einstein was thought to be autistic), or have difficulty making friends. We are all different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time, like you would if you landed on an alien planet and didn’t understand how the inhabitants communicated. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by ok. But if something, anything changes, then I have to relearn the situation all over again! It is very hard.

When you try to talk to me, I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time.

You might think I am ignoring you–I am not. Rather, I am hearing everything and not knowing what is most important to respond to. Holidays are exceptionally hard because there are so many different people, places and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful.

I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.

If I cannot sit at the meal table, do not think I am misbehaved or that my parents have no control over me. Sitting in one place for even 5 minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people–I just have to get up and move about. Please don’t hold up your meal for me–go on without me and my parents will handle the situation the best way they know.

Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with eating: sight, smell, taste, touch AND all the complicated mechanics that are involved with chewing and swallowing that a lot of people with autism have trouble with. I am not being picky, I literally cannot eat certain food as my sensory system and/or oral motor coordination are impaired.

Don’t be disappointed if mommy hasn’t dressed me in starch and bows. It’s because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable! Temple Grandin, a very smart adult with autism, has taught people that when she had to wear stiff petticoats as a child, she felt like her skin was being rubbed with sandpaper. I often feel the same way in dressy clothes.

When I go to someone else’s house, I may appear bossy and controlling. In a sense, I am being controlling because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things–just please be patient with me and understanding of how I have to cope…mom and dad have no control over how my autism makes me feel inside.

People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it “Self regulation,” or “stimming’. I might rock, hum, flick my fingers in my face, flap my arms or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world.

Sometimes I cannot stop myself from talking, singing, or partaking in an activity. The grown ups call this “perseverating” which is kind of like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable, and I don’t want to come out of that comfortable place and join your hard-to-figure-out-world. Perseverative behaviors are good to a certain degree because they help me calm down. Please be respectful to my mom and dad if they let me “stim” for a while as they know me best and what helps to calm me.

Remember that my mom and dad have to watch me much more closely than the average child. This is for my own safety, preservation of your possessions, and to facilitate my integration with you tippies (what we autistics fondly call you neurotypical folk!) It hurts my parents’ feelings to be criticized for being over-protective or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.

Holidays are filled with sights, Sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you tippies but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow tippy rules.

I am a unique person–an interesting person. I will find my place at this celebration that is comfortable for us all as long as you’ll try to view the world through my eyes!

~By Viki Gayhardt

Thank you Viki Gayhardt. Happy Holidays to all!

Posted in Autism Challenges, Autism Lessons, Helpful, Uncategorized | 2 Comments

Happy Birthday N

Today N is 12 years old. It was about 1 hour ago, 12 years ago, that my life changed in a dramatic way. I did not know it, at the time, that the birth of this child would change me in ways I could never have imagined. Every child does that? Well, yes, but there are changes, and there are CHANGES!

N’s birthday has always been bittersweet. Usually more bitter than sweet. In spite of trying to stay in the moment, I have inevitably been sucked back into memories: and in the process I have found myself re-living some of the mostly difficult times we have experienced together. My memories are not all bad, but they start that way, because that is what happened. They follow a progression, from his infant illness, hospitalization, surgery, failure to meet developmental milestones, loss of developmental milestones, regression, worst case scenarios, autism, ramifications of autism, depression, fear, losing hope, finding things unexpected; finding connection, communication, acceptance, and love. It is like travelling along a road that descends into a valley filled with fog, and then slowly, fearfully, carefully, finding the road to travel upward and outward to where there is visibility.

This birthday – I am so glad to say that I have left that valley. I don’t care if he did not want to open his presents. They are still sitting wrapped on the table. Maybe I will just put them under the tree for Christmas! It does not matter that he was afraid of the birthday cake, or that it took him so many tries to blow out the candles, or that he did not eat the piece of cake that I cut for him but instead ate the icing off the rest of the cake. It is his birthday, it is his birthday cake! It does not matter that he was more interested in sticking to his routine than having a celebration! Today I am glad that he came into my life and I celebrate that gift with all who are able to understand.

Happy 12th Birthday

N did not eat his piece, he ate everybody else’s icing

Posted in OMG | 1 Comment