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!!

Friday, December 21, 2012

Five years already!

Today, it's already been 5 years that Cédric was born!!
Of course, time flies and it seems only yesterday to me that I held him in my arms for the first time. But if I think carefully, we've had 5 very full years.At only 5 years old, Cédric has been to France 3 times, to Florida 3 times and to the Dominican Republic once. So we've traveled quite a bit.
One of the positive sides of Cédric's journey and his developmental rythm is that Ive 'kept my baby a little longer than most people. Of course, I could do without the diapers, but I wouldn't give up the awesome hugs and kisses I get for anything in the world!
This special day for him was also another chance for me to realize how lucky we are for the way he's taken care of at school. From the special education teacher and the teacher aids assigned to his case, to the principal, and including the teacher and teacher aid of his regular classroom and even some people who are technically not involved with him, everyone does their best to take great care of him, tries to make his days productive but pleasant, and make exceptions for him. All of them seem very attached to Cédric and seem to hold a special place for him in their heart. Today more than ever, I witnessed their love and devotion, in the thoughtful gifts, but mostly in the hugs, the kisses, the smiles, the songs, and for Cédric, who is very affectionate, it's crucial and it warmed my heart.
 Today, Cédric received a few gifts and Happy Birthday was sung to him 5 times (his teachers, his classmates, his maternal grand-parents, his paternal grand-parents, and Mom and Dad). Tomorrow, we'll celebrate his birthday with a few carefully chosen friends, we'll sing Happy Birthday Cédric once more time, and we'll give him his big gift: a sensory swing. Thank you to all those who participated in that gift!

And please join me in wishing a happy birthday to a very loving, beautiful, special, BIG boy, if only with a little thought or prayer for him!

Thursday, August 16, 2012

Dog tales!

After a busy summer, I finally have a moment of calm to write.

As the title, suggests, recent events have led me to talk about dogs!
I've been meaning to talk about Schatzie, our dachshund, for a long time, to share the many similarities between her and Cédric.
Saddly, because of back problems that gave her unbearable pain, Schatzie left us for eternal, pain-free rest, but I still want to talk about her, to honour the memory of a this one-of-a-kind little dog.

In the past couple of years, I noticed similarities between Schatzie and Cédric that made me wonder. Schatzie had anxiety attacks and was very sensitive to routine change and separation, she was clumsy to the point of hitting her nose when turning her head, she had food intolerances, she didn't play with toys the way you would expect, she was impulsive and a flight risk (and therefore alway on leash or attached in front of the house), she even had some sensory sensitivities and preferred lying down on me if I had my soft pjs on. All this led me to joke that she was on the autism spectrum!! Of course it was only a joke, which I hope won't offend anyone. It just really amused us to notice these similarities between them, and Dave and I joked a few times about the possibility that our parenting style had something to do with all of Cédric and Schatzie's behaviours...
Now that she's gone, I must add that she was an extraordinary dog, with an unmatched sweet personality and full of humour and happiness. She was Cédric's first dog and she never hurt him, even though the opposite is not true. He pulled on her hair and walked on her tail a couple of times (without any mean intention) and shes always reacted by leaving or giving him a little kiss. We will miss her a lot!

I wasn't planning on talking about her death that I hoped would happen in a long time, but such is life. One of the hardest parts of Schatzie's decline was explaining it to Cédric. I think he noticed that she wasn't as active and as much around in the last few weeks. Twice at the very end, she came out in the kitchen while we ate and Cédric started crying for no reason. Did he feel our worry and sadness, or maybe even Schatzie's pain? I talked to him a few times, to tell him she was in pain and she might leave us.. I debated a lot about the idea of allowing him to say good-bye. But she was in so much pain, she wasn't herself anymore, and I don't think he would have understood. To this day, I don't know if he is conscious of her death. After we had Schatzie put to sleep I talked to him a few times about the fact that she was in too much pain and that she had left us for ever. But is is very hard for me not knowing if he understands, not knowing if he misses her as much as I do, and not knowing if I handled the situation the best way for him.


And what followed makes me wonder just as much... I knew I wanted another dog right away. I couldn't bear the thought of coming to an empty house without a wagging tail, without wet kisses, without soft hair to pet. But there were decisions to make and as with all our decisioins, theyr were made more complex by autism.
We first thought of adopting a retired racing greyhound. But after meeting ne with Cédric, it turned out he was a little scared of such a big dog and their size created risks, in the stairs for example. After eliminating that option, we had to decide between an adult dog and a puppy. With Cédric, I thought an adult dog would be calmer and therefore a better idea, and it would be easier than a puppy to take care of. But someone suggested that a puppy gets used to whatever it's raised with, whereas an adult dog already had a personality with preferences, fears, etc., and that a young puppy would be more apt to getting used to Cédric and, for example, not bite him out of fear. So we decided on a puppy and chose a medium size breed so that Cédric wouldn't be scared but also couldn't hurt the dog too much, with a calm temperament so as not to make Cédric more active than he is, and who wouldn't shed too much.

So let me introduce you to Kimura, our little shiba inu female:


All that remains is to make sure to raise her so that she's as tolerant of Cédric as Schatzie was and hope that Cédric gets attached to her and is careful with her. Piece of cake, right? :/
For now, he seems to find her cute but he's a little jealous of the attention we give her!

Sunday, June 17, 2012

SuperDad

As today is father's day, Happy Father's Day to all the Dads reading this post, but mostly Happy Father's Day to Dave, Cédric's Dad.
A little post to say thank you.
Thank you for being a Dad who changes diapers without complaining (when it's been 4 and a half years and it's not over, it really counts!!), a Dad who helps feeding, a Dad who gives baths, a Dad who brushes teeth and puts to bed (and sings the same three songs over and over because he doesn't know any others, lol), a Dad who works hard, a Dad who researched recipes and possible therapies to help his little man, and a Dad who gives lots of kisses!!


Cédric couldn't have chosen his Dad better (and I'm pretty happy with my choice too ;)).
Big Love