Tuesday, December 10, 2013

Thought of the day: never give up

Lately, a few little things have reminded me that we can never give up on our kids, never stop trying to push them ahead and expose them to all sorts of things. The fear of our attempts going wrong and failing, or simply of our efforts being wasted and useless is usually what makes me "give up".

Let's face it, we're tired! And organizing anything takes planning and efforts. So when we think it's useless because Cédric doesn't care, or fear it will go wrong, we opt out to avoid wasting our time and energy.

The best example both of that tendency we have and of it being a mistake is Halloween.
Last year, we gave up and boycotted it. The reasoning was: Cédric doesn't understand the concept, he tends to hate hats and weird clothing, making costumes difficult, and he can't eat anything the neighbours give anyways!
This year, our early conversations about Halloween were leaning towards doing the same thing and staying home. But on Sunday October 27th, we realized we were being lazy and decided we wanted to do Halloween. So off we went to find a costume, buy candy for the trick or treaters, ask Dave's parents to come over and give out candy while we went trick or treating and decorate the house. And then we decided that if we were doing this we should do it right, and we bought Cédric the chips he can eat and wrote a letter to our neighbours explaining that he can't eat anything but these chips, that he won't answer them, or say "trick or treat", or maybe even look at them, but that he does like being around people and other kids and that he LOVES chips and will enjoy getting them. We described his costume so they could recognize us and asked them to give him the attached bag of chips. We figured it would be easy for them to do that, everything was provided and if they didn't want to, we told them that was okay too.
I am so glad we made the effort!! The neighbours were all very supportive, friendly and generous. But most importantly, Cédric seemed to enjoy it. He wore his astronaut costume, including a helmet, all night. He walked door to door to 23 houses without complaining (much). He showed excitement at getting the chips. In short, he had a real Halloween! Had we been lazy we would have missed out on a great experience.

And it happened again today. As we're spending Christmas away, I haven't decorated the house on the basis that Cédric doesn't understand the concept. But today when I picked him up, there was a Christmas tree that had just been decorated. Cédric saw it right away, approached it, touched the branches and looked at the light, especially the big lit up star at the top! And now I feel lazy for not decorating and I'm planning on taking out our small LED tree and asking his grand-mother to have a tree in her house during our holidays!

All this is why I don't regret failed attempts either. On Saturday, we went to the library hoping to listen to Christmas stories and songs. Cédric would have none of it and rolled on the floor and screamed, so we left. Was it embarrassing to have some people stare? Sure. Was it disappointing to have gotten dressed and gone there for nothing? Sure. Will it stop me from taking him to a Christmas play at the high school tonight? No. If it goes badly we'll leave and if it goes well, we'll have exposed him to another fun activity in the community!

I just don't want him to miss out on anything and limit him and his growth because I'm lazy and pessimist...

Tuesday, August 13, 2013

Neurotypical moments

We say autism is a spectrum, and it's absolutely true, there are degrees to each symptom, and degrees of severity in general, and there are even variations between the symptoms that are present at all and the associated diagnoses. I guess we apply this term to autism specifically because the variations are really wide compared to the majority of diseases, disorders, conditions, etc.
But the neurotypical population (which people who don't know this term would call "normal people") are on as wide a spectrum! There are degrees from one person to the next for each physical or personality trait: physical strength, intelligence, deftness, shyness, etc. And the line between some neurotypical people and some autistic people is sometimes very thin...
Although maybe it's just the "autism Mom" in me seeing autistic traits everywhere! And spectra! LOL

Lately, I discovered a new spectrum. As parents of an autistic kid who has delays compared to his peers, we're always watching for "neurotypical moments" where Cédric does something age appropriate. Lately he's done two: one was beautiful, poetic and sweet, the other ... not so much!

A few days ago, the weather was perfect for a car ride (which we do quite often to pass the time) with the windows open (which we almost never do). Usually we use the air conditioning to avoid wind, drafts, and because in Timmins, we have no mid-seasons where the weather is perfect for opening the windows. Also, and probably more importantly, I'm always worried Cédric will throw something out the window ( a shoe, his sippy cup, his Ipad). But in this case there was nothing for him to throw, it was sunny and cool and I decided to open his window. At first, he looked at the window. He looked like he was analysing the colour difference between what he saw through the window and what he saw directly, above the window. A fairly typical behaviour for him and typical of autism: intense observation. But quickly he put his hand above the windew, and felt the outside air, and he spent the next twenty minutes with his hand outside, cupped to feel the wind and "grab" the air". A totally neurotypical behaviour, and an absolutely adorable one! Had I not been driving, I would have taken a picture :D

About two months ago, he had another moment, equally neurotypical, equally appropriate for his age, also in the car, but much less poetic. I saw him in the mirror put his finger in his nose. I had seen him do that in the past, but usually it doesn't lead to anything, he doesn't manage to get anything out of there. This time, he pulled out a nice booger. I turned around to wipe it with a tissue and saw Cédric put his booger in his mouth and eat it with impressive dexterity. As for me, I ended up with very mixed feelings of pride and disgust and a huge dilemma between telling him it's dirty and not to do it again, or praise him for his deftness :D

Monday, July 15, 2013

Now that's shitty!

As promised in my last post, it's time we talked about poo :D

One of the original goals of this blog was to share our experience regarding Cédric's digestive and intestinal issues and their side effects. Even thought it might seem excessive to some, or at least disgust them, Cédric's feces are a part of our everyday  life. I have therefore wanted to address them for a long time. But last Wednesday's events, July 10th 2013, lead me to believe it's time...

Since he was born, Cédric has never had normal bowel movements. He's always varied from constipation to diarrhea, which should have been a hint to us. But in the spring of 2011, things deteriorated and made us take action. He was three and a half years old and wasn't potty trained, so we had already changed more than the average amount of dirty diapers, and he started having diarrhea.

Diarrhea of gargantuan proportions! Diarrhea 3 to 5 times a day, everyday! Diarrhea that was creamy at best, most of the time completely liquid! Diarrhea that was orange or red! Diarrhea that smelled like acrid vomit!
I'll discuss later, in another post, the causes we identified and the steps we took to remedy to it; I focus here on the our "shitty" daily life.

Cédric is now five and a half and is still not toilet trained. He also has the unfortunate habit of pooing in the bath. Water relaxes him and he feels free without a diaper and I don't blame him. But depending on the smell and consistency of the day, it can be more or less fun to clean up. He also had a phase where he would put his hand in his diaper right after a bowel movement, so we had to clean some poo from his computer keyboard, the floor, our clothes, our arms, hands, ... (knock on wood, he hasn't done it in a while). During the period of intense diarrhea, it wasn't rare for the pjs or even the sheets to be full of it in the morning. The large ones during the days often overflowed and dirtied his clothes. We even invented a word: a "cacastrophe", and songs with colourful lyrics.
And last Wednesday, we reached a new level in our experience with poo. In the bathroom of the school where Cédric goes to IBI, he found a small brown chunk. Despite his therapist holding on to him, he grabbed it. She took his hand to take the chunk away, but considering the nature of the thing, her hand slipped and Cédric ate poo! Another student's poo! His therapist washed his hands, his arms, his face, inside his mouth... even his hair was wet and the senior therapist thought he had stuck his head in the toilet :D
When they told me, I said I'd rather that than dairy (to which he is highly intolerant) and they seemed relieved that I have a good sense of humour! And my mom got a good laugh when I suggested that if the child from whom he ate feces has a better intestinal flora than he does, it might even work as a fecal transplant (a medical procedure unfortunately not very common but that we have considered, which consists in recreating the intestinal flora by introducing healthy feces) ;)

I'm writing all this because someone should!
Not only do Dave and I change a phenomenal amount of diapers (and "play" in shit regularly), but it is a daily topic of conversation.
When you have a child with sick intestines, every diaper counts. Even though we fight as to who will have to go change the diaper (and I should say that I am very lucky to have a husband who changes a lot of diapers, the lucky one who doesn't have to go always check how the contents were. When he's out of town, Dave asks me if Cédric had bowel movements and how they were. We discuss consistency, colour, odour, quantity...
At some point, Dave even described Cédric's stools as strangely not constipated, but not diarrhea. He said they were formed but not hard, of average size, that they didn't smell too strong... It didn't even occur to him that they were NORMAL!! And when this happens, even thought the word escapes us, we rejoice at the news of normal poo!

And there you have it! I hope I didn't gross everyone out, and mainly that nobody decided to read this post during a meal...

Monday, May 20, 2013

The media, the Internet and the face of autism

Are you intrigued? It sounds like the title of a thesis, doesn't it?
It is in fact just a small personal rant!

Autism is talked about more and more in the media and social media. That's a good thing of course, the intent being to make the general public more aware and to promote acceptance. Medical documentaries or the sharing of scientific articles is very important for that, as they help people better understand the disorder and the magnitude of the spectrum.

But there seems to be a tremendous amount of videos and articles that show children or adults on the spectrum who have become astrophysicists, have written books, have invented revolutionary things, etc.
And it annoys me!

Please don't misunderstand, I'm not against the whole concept! Of course, it's important to share these achievements, these success stories, in order not to limit the image of autism to that of Rain Man. And obviously, for any parent, or member of the family of an autistic child, it's an important source of hope which allows not to think of this disorder as a sentence and to remain positive in order to give autistic children all the tools, all the opportunities, and all the support we can for them to reach their potential.

But beyond the hope it provides, I find it a very limited image of the spectrum that is autism. It is one of the ends of the spectrum, that of succes, of high-functioning, of higher-than-average intelligence. And it is true that there are many people on the spectrum who are like that. But there are also many autistic people who remain non-verbal, or who are never able to function in society, or who also have an intellectual disability.
The result is that many people, sometimes friends and family, think that all children on the spectrum have a brilliant future. It seems to me that it could give false hope to some, or justify a certain degree of denial of what the reality is.
It is not a good representation of the scale of the spectrum and I think it can even damage the integration and acceptance efforts by giving a false image or at least a limited one.

On my blog, in any case, you can expect to hear about Cédric's successes, and if he becomes an astrophysicist or discovers a way of squaring the circle, I promise to shout it on the rooftops. But you can also expect to hear about intestinal issues, language delays, specialized classes and even specialized programs, sensory needs, ... an honest representation of our everyday life.
In fact, the next post will be about poo :D

Saturday, February 23, 2013

Dog tales part deux

In life we make many attempts. That's how we have success and make discoveries, but inevitably some end up in failures. The trick is to make decisions as best we can and take failures as lessons that help us progress and do better the next time around... Easier said than done!

When we chose Schatzie, our mini dachshund, in 2004, our criteria were simple because we were young and had no kids. We took our time, did lots of research, chose a breed and a breeder very carefully. And the result was an amazing success. When we chose Kimura the shiba inu, in 2012, however, our criteria were more strict and we went too fast and did it under the grief of Schatzie's death. We chose both the breed and the breeder poorly and it was a resounding failure... uh, I mean a valuable lesson!!

After months working with Kimura, we had to admit that the situation was not good for anybody and we had to make the very hard decision to find her a new home that would suit her better. Every dog had their strengths and weaknesses, but our main problem, and the one that turned out to be insurmountable, was to make Kimura understand the family hierarchy and to make her accept the fact that Cédric was a master and not another puppy, Cédric being more or less non-verbal and incapable of demonstrating his "dominance" over her.
So at the end of January, we parted from Kimura. The decision was very hard to make. I felt guilty for having made the wrong choice in the first place, for not doing more to improve the situation and for making Cédric go through another loss. I also felt cowardly for not trying longer and giving up, sad of losing this adorable little animal and of making her go through this separation and major change, and sad of ending up without a dog (for me and Dave but also for Cédric).
I really wanted a dog, because I love them, but also to keep Cédric company as he doesn't have siblings. But I promised myself (and Dave) not to make the same mistake again, and therefore not too make too fast a decision and to do everything to ensure that the next attempt would be a success.

It's an interesting fluke that in the fall, Dave heard of service dogs for autistic children!
After researching the topic, we were considering it even before deciding to re-home Kimura. The advantages reported by professionals, research and the families who have them are incredible! A service dog can provide:
- increased security: with the use of a tether, the dog can be attached to the child to prevent him from crossing the street without looking, getting lost at the mall or jumping in a lake or river;
- more independence: for the same reason as above, the child can walk a little further with his dog, without always having someone holding on to him;
- more socialization: the security and the independence allow more outings and therefore more opportunities to meet people and the presence of the dog is comforting and makes the social contact less scary;
- less hyperactivity: for some reason, the presence of these dogs calms children down;
- healthier sleep patterns: for those same (metaphysical :) ) reasons the dog, especially if he sleeps with the child, helps to regulate sleep patterns;
- reduced stress: in the child and the parents, studies show that the levels of hormones linked to stress lower significantly after acquiring a service dog;
- help with sensory needs: the child can pet and hug the dog and some dogs even lie of the children to provide deep pressure;
- less tantrums: the dog feels stress before it even manifests itself and calms the child down or warn a parent or adult of an imminent tantrum;
- protection against food allergens: the dog can be trained to sniff gluten or casein and to warn the parents of their presence;
- immeasurable friendship: even though the connection sometimes takes time to be established, in most cases, an incredible attachment develops between the dog and the child, for some stronger than with anyone else, even the parents, and the dog's name is sometimes one of the first words a non-verbal child utters.

I'll stop now, but I'm sure I'm forgetting some!

After realizing all that, it was difficult for Dave and I to imagine NOT getting Cédric and ourselves a service dog. But that too is easier said than done!

One option is too choose a very sweet and calm puppy and do it yourself. Some do it and I was very tempted, but Dave was worried about the amount of work ir represents and the possibility of failing. The second option is send an application to one of the charitable organizations who provide service dogs. There are two who serve our isolated little corner of Northern Ontario: National Service Dogs and the Lions Foundation of Canada Guide Dogs.

There are also a few associations in the US who ask applicants to raise funds to finance the dogs before receiving one.
And finally, there are simply paying services.

Even though it may seem strange at first, we chose the last option!
There are a number of reasons which motivated our choice:
- the approval was immediate: for the charitable services, an application must be sent, which can take time to be evaluated and might be refused;
- the dog will fully belong to us: the charitable organization retain legal ownership of the dog and can take him back at any point (I'm sure it's rare and justified when done, and I understand that it is a necessary precaution but the idea bothered me a little);
- the dog will stay with us for retirement: the charitable organizations can chose to place the dog with someone else and I find the idea really sad;
- the training will take place at home: the majority of services require a trip of a few days, without the child, to train whereas with the service we chose, the trainer will come to our hometown to introduce the dog to his new environment and train us;
- the dog will be custom-picked: most services, including the free ones, train a large quantity of dogs and choose the dog that works best with each parent or family at the time of training, whereas in our case, the dog will be chosen especially for our needs (size, temperament, etc.) and will also be trained for Cédric's specific needs;
- and finally, we will be able to pick the dog's name: it's a trivial aspect but it really matters to me, we already won't be able to pick the breed, the colour, the gender, ... because it is the need for a specific temperament that takes priority, so this will allow us to make the dog ours in one way before he even joins us (and it gives me something to do in the meantime... I already have a small list)!

So we chose the Thames Centre Service Dogs, located in Southern Ontario. The trainer has been working with dogs for a long time but she also has a son on the spectrum which motivated her to train service dogs. She only takes a few families at a time which makes it a faster more personalized approach. She also works with the local Ontario SPCA who allow her to give temperament tests to the dogs who seem to have the potential to become service dogs and to take them if they have the right personality, and the idea that the service dog might be a rescue is really neat!

In the meantime, we are dog-less... But before Kimura left, we had started taking a training course with her. When I talked about our situation to the teacher, she generously offered for me to bring Cédric to the end of the class, during the puppies' free play, so that he remains used to the presence of dogs and gets this animal contact at least once in a while! I really thank her for that!

Considering the length of this post, I'll address the cost and financing of our service dog another time!

Saturday, January 19, 2013

Ninja reflexes

 Impulsivity is one of the potential (and common) traits of autism. From a young age, Cédric has had a tendency to all of a sudden throw himself at things, start running in the direction of his choice, grab whatever interests him, ..., without any consideration of the potential dangers for the objects, other people or himself.

As for me, I've always been really bad at sports. I couldn't catch a ball thrown at me because of lack of coordination, especially eye-hand.

But ever since Cédric has been with us, Dave and I have developed ninja reflexes!! We can catch a sippy cup before it reaches the ground, stop a thrown hand before it catches other people's food, stop the dude before he starts running into the street.

The trick? We follow the eyes. Cédric always plans his moves and as that take a little time (connection problems in the brain), if we keep a watch on what he's looking at, we know what he's about to do and we can stop unwanted actions.

The price? We're always on guard! When Cédric is with us (and in general, because it has become a way of living and it's hard to stop), we live in a state of alert with all our sense on the lookout for the merest sign of danger.

The benefit? Ninja reflexes!!