Tuesday, October 27, 2020

SHINE (DLG4 genetic mutation): We found the egg!

Quite the title! And so much to share to explain…

I’ll try to be concise and to focus on the most important aspects.

First, it’s been almost 5 years since my last post, so of course, things have happened.

Second, among those things, we have received a genetic diagnosis (which has led us to a group of parents of individuals with the same mutation) and that changed everything.

Finally, I just re-reading my last post, published on January 18th 2016, and I realized that in almost 5 years, everything has changed, but nothing has changed, except we found the egg!

In “the chicken or the egg”, I wrote about autism vs intellectual disability, about primary vs secondary diagnoses, about correlation vs causation, and about the repercussions of all of that on access to services and the image it gives us of Cédric and his functioning.

Thanks to a genetic test, from what the geneticist told us and what we understood from it, Cédric’s genetic mutation is the cause of and the explanation for all his diagnoses: autism, intellectual disability, epilepsy (and the rest). So scientifically speaking, it is in fact the egg, and philosophically speaking, it has also made a world of difference in our understanding and perception!

Cédric has a de novo genetic mutation (which means it’s not hereditary) on the DLG4 gene (on chromosome 17).

In his case, it is a frameshift mutation.

The DLG4 gene is responsible for the production of the PSD95 protein. As a result of his mutation Cédric only produces half of the protein. And PSD95 is a scaffold protein. It is therefore very central to brain function and influences the production of 60 to 80 other proteins. So it has major consequences. 

The fact that a clear cause explains everything changes nothing in and of itself, and many would say the cause doesn’t matter, but for us it’s reassuring, it helps us better understand the why and the how.

Unfortunately, there are only about 40 cases diagnosed in the world for now. Fortunately, this is 2020, and the world is small. We have joined about 15 other families affected by a DLG4 mutation in a Facebook group and the feeling is that of finding our clan.

Contrary to our experience in groups centred around autism, the commonalities between Cédric and the other “DLG4” individuals are incredible. The other parents’ experiences are very similar to ours and we recognize ourselves in their comments and descriptions.

It is a reassuring and enriching exchange.

Since it is the infancy of the scientific discovery of the syndrome, it’s still being defined by the medical teams. The various researchers working on it around the globe are in the process of establishing the phenotype. But if the information we have, a group of parents has decided that the current medical term being used (for now vague and not very pretty) just won’t do! So we have adopted the term SHINE syndrome, an acronym for the symptoms most commons in our children:

S: Sleep disturbances

H: Hypotonia

I: Intellectual delays

N: Neurological disorders

E: Epilepsy

They have created a website which described SHINE syndrome and shares our families’ experiences as well as articles and research, and which will help with awareness: http://shinesyndrome.org/ They have also created a logo for the syndrome.

I really like the choice of the term SHINE and their choice to include stars in the logo. However, for me, for some reason, in my perception of who Cédric is, the genetic aspect is crucial. So I would have liked the logo to include the genetic aspect and being a bit of a rebel, I decided to make my own version (among other things for my blog). I kept many aspects (title, stars, main colours) and I added a stylised strand of DNA (which I designed myself), and since I love rainbows… So here’s my version of the logo (which you can also see in the new header at the top of the blog):

I could talk about so much more: what it all means for potential treatment, what it hints towards as fas as autism goes, what repercussions it had on services, the decisions it lead us to take, etc.

But the main thing is: we feel like we found the egg!

Monday, January 18, 2016

The chicken or the egg

Happy New Year!

When looking at my previous post, I realised I skipped a whole trimester.
So here's a short recap of the last trimester of 2015:
- transition from IBI to school, which went well thanks to an amazing team (at IBI as well as school),

- quiet Thanksgiving and fun Halloween, dressed as ninjas,
- relaxing vacation in the sun for the parents,
- fall in the stairs for me, the day we got Mani, our new service dog,
- and vacation in Florida for Christmas, with a lot of sun, days at the parks, and our first Disney Cruise.

But let's move on to 2016!
Our year, as far as Cédric's journey goes, started with the results of a consultation with a team of experts. They observed Cédric in October to advise us concerning some of his more extreme and hard to understand behaviours.
They offered a variety of advice but most importantly one core conclusion which gives us a better idea of who Cédric is and how to approach his development, but which also brings me to the following question: the chicken or the egg?

Let me explain. Cédric has had an autism diagnosis since the age of 4, and a diagnosis of intellectual disability for about a year. As my previous post mentions, he has a chronological age of 8, but a developmental age between 1 and 2.
The psychologist of the team concluded that the approach we take regarding Cédric's development, abilities, and learning should take this disability into account, even more so than the autism. Establishing for Cédric goals and expectations typical for children on the spectrum wouldn't be realistic, unfair towards him, and would only lead to disappointment and failure. We must first consider his developmental age and abilities.

But the system of services in place in Ontario consider autism his primary diagnosis. He therefore accesses autism services with autism specialists. And as he already gets services for that diagnosis, he can't access the corresponding services with the agency specialized in intellectual disabilities. This system is in place to avoid service duplication, partly to lower costs and to insure that all children access services within reasonable timeframes.

And it's true that according to the most recent studies and theories that Dave has read, it seems autism is genetic, and it is autism which causes the brain to function differently during its development, preventing the typical connections to happen and in some severe cases, causing an intellectual delay or disability.
We often ask the question of the chicken or the egg, and the theory of evolution answers rather clearly that the egg came first. In our case, the diagnosis of autism is in fact primary.
But when we ask the question philosophically, things are more complex. For the chicken or the egg, we are usually trying to raise a question with no answer, an endless circle, and everyone can argue their view of the topic.
In our case, if we stay with the egg, we limit Cédric's access to specialists who might be better able to understand his functioning. The chicken, Cédric the way really is in the end, matter more than the egg. Cédric is more affected and limited by his intellectual disability than by his autism.
And in fact, as there is comorbidity of the two diagnoses, regardless of whether they are two separate things or whether one causes the other, he should have access to specialists of both.

If the question was purely philosophical, or purely scientific, it wouldn't matter much. But because of the issue of access to services, it is crucial. It even affects his schooling. First, just as for us at home, the team who works with Cédric (teachers, teacher aids and consultants) must change their perspectives and expectations. Moreover, and most importantly, the school has an autism classroom, brand new this year, just in time to welcome Cédric. But it also has a development classroom, more adapted to children with various diagnoses, and often, a intellectual delay or disability. And the question therefore is whether Cédric should be in the autism classroom, or in the development classroom.

The question is recent and hasn't yet done or changed anything.
Personally, the psychologist's conclusion doesn't surprise me and confirms what we felt ourselves. It's a new step in the grief that is having a child with special needs. We always hang on to the idea of a remission, sudden progress, a magical medication or procedure. But it's also a step towards a better understanding and acceptance of our son as he is and it likely that more realistic approaches and expectations would help us eliminate frustrations for him as well as for us.
But I mostly feel a lot of questions, phone calls, decisions to make, and changes coming. I can only hope that they are for the best and help us better understand and support our little dude!

Monday, September 14, 2015

How old is he?

Simplest question in the world for a parent! At first we count in months, than years but with quarters and halves. And eventually just years. Often we marvel at how fast time flies and wish they would stop growing up altogether.

For me however, as Cédric progresses in age and grows in size, this question is getting harder to answer, or at least harder for me. I struggle with the intent of the question, with how to answer it, and with which degree of detail I want to go into.

There tends to be sort of three scenarios:

- the person asking sees him or somehow already knows about his delays and autism, so that's easy, all they want to know is his chronological age.

- the person sees him and can tell he's big, but can also tell there might be something different about him. Here I wonder if they just want to know his age, if they are trying to determine whether he's just really big for his age which would explain his behaviour, or if there is something different going on and trying to ask what without being rude. Sometimes I give his age and let them conclude what they want, sometimes I tell them his age but specify he's on the spectrum. Sometimes I don't mind the subtext to the question, sometimes it annoys me...

- and the last might be the most taxing and hard for me. I start talking to people I don't know without Cédric being present and the conversation goes to kids. The question of age comes up and when I say his chronological age, people tend to comment on how fun that age is, all the things they can do at that age, the new developments and possibilities. And I have a choice to make. Do I nod along and move on to another topic or even another person to talk to? Or do I explain? This scenario is hard for two reasons. First it is sad almost every time to be reminded of all the things other kids his age do, like, learn, etc. that he doesn't. And second, it might be a quick note to the conversation but quite often it turns into a whole long conversation about autism and sometimes I don't feel like going into all the details, focusing my thoughts on all of that again. But I also feel that it helps awareness, so I feel somewhat compelled to share.

And if you're wondering what the answer to the question is, Cédric is 7 years old chronologically, but functions at around 1 to 2 years old developmentally according to the latest assessment, although it's not uniform. He might do some things like a 1 year old and others more like a 3 year old would.So as you see, simple question but complicated answer!

Wednesday, May 27, 2015

Sponge Cédric sensitive pants!

One of the stigmas that has long been associated with autism is that children on the spectrum don't experience empathy and don't have feelings. For a long time, they were thought of as cold and distant.
This prejudice is one of the reasons doctor maintained for a long time that Cédric was not autistic because he was "too social".
Recently, one of my friends posted an article on Facebook which presented the theory that not only do autistic children have feelings (which is obvious in Cedric's case) but that they might even feel more than neuro-typical people. According to the article, it might be the reason some of them refuse contact and shy away for other people's presence: they have such a sense of empathy and feel to such a degree that it is too intense.
Just like everything else in autism it seems, this trait can be different from one individual to the next. But personally, while reading the article, all that came to mind was that this was obvious in Cedric's case.

I call Cédric my sponge! He captures the feeling of others around him and though he doesn't respond to them as we would expect, they affect him tremendously. He doesn't console us when we cry or are frustrated, but the emotional climate of his environment dictates his mood. He absorbs what surround him. For Cédric, moods are contagious. So if the people around him are frustrated, stressed, anxious, or impatient, Cédric gets frustrated and angry easily. If on the other hand whoever is taking care if him is calm, happy and patient, Cédric stays in a good mood.

I've known this for a long time. When he was a baby, Cédric only cried when me was in pain or if another child was crying. But it was confirmed to me again during our vacation in Florida. I realized one of the reasons Cédric feels so good in Disney World is that everybody feels good in Disney World. The crowd doesn't bother him as long as the individuals who compose it are happy. In Disney World, everyone is happy, relaxed, on vacation! He only got frustrated at meal times, when he was hungry, but also when everyone around us was hungry and fighting to find a seat in the restaurants. At the water park, he is totally relaxed in the lazy river where everyone is floating around and he is happy in the small, fairly calm pool where young children are playing. We tried the wave pool, however, and even though he loved the waves and jumping with his Dad, he got upset and frustrated for no apparent reason to us... until I realized that there were many people around us and all loud and overexcited. The intensity of the emotional mood was too high and Cédric wouldn't deal with it.

The problem of a sponge is that it needs wringing. When Cédric is doing well, he reacts to our moods but recovers quickly, but when he is tired, sick, hungry, too hot, etc., he loses his ability for self-wringing. We have to change the climate around him, often physically remove him from the place, and let the sponge drip slowly. At the water park, we had to leave the pool, give him a snack, go around the river, and play with him in the small pool before he really managed to get his good mood back,

It is therefore for us a daily exercise to stay as calm as possible to avoid entering a vicious circle. Good and bad moods are contagious for him, but for us too. Cedric's moods especially so as he is very demonstrative. So if we're tired, frustrated or anxious, Cédric feels it and has tantrums, which makes us more tired and frustrated and less able to patiently deal with his behaviours, and as he feels that we're angrier, he has more tantrums, etc., etc.!
It is also an important factor in our choice of activities, visits and maybe even more in who we choose to watch him. As much as possible, we select people who are positive but most importantly patient and calm. Someone too active and intense,  even if in a good mood, always gets overwhelming for him and ends up having problems with him (difficult behaviours, tantrums, crying, ...).

The simple fact of having realized all that helps me analyze the causes of his tantrums and to remain more calm. But our patience has limits and the rest of our daily life doesn't stop in order to help us, so we exercise (and do yoga for me) and go on vacation as often as possible to recharge our batteries!

Here's the little dude, all calm and happy in a teacup :D

Tuesday, January 27, 2015

Fist of monkey

A while ago, on a podcast called Edumacation, I heard a story about a group of Shaolin monks showing great interest in a baby. The baby had thrown his hand very quickly and grabbed his dad's glasses right off his face. The monks were amazed and said the baby had "fist of monkey", in other words what they considered to be an innate ability for Kung Fu where the body was almost bypassing thought and instinctive springing into action.

The story really resonated with me.

Ever since he was young, Cédric was clumsy and diagnosed with low muscle tone and delays in gross and fine motor skills. To this day, at 7, he doesn't hold utensils properly, he's only slowly learning to twist things, his pincer grasp is very weak, he can jump up but not forward.
On the other hand, ever since he was very young, he's been lightning fast. He can shoot a hand forward and grab what he wants faster than Lucky Luke's shadow, he can move every part of his body independently yet simultaneously in different directions to stop you controlling him, say when you're trying to take a blood sample or an X-ray, he can stop you from tickling or kissing him.

Having now learnt the basics of Gracie Jiu Jitsu, I realize it goes even further than that. The Gracies developed brazilian Jiu Jitsu for self-defence, by perfecting techniques that use gravity, balance and the body's strengths and weaknesses so that even a small person could get out of fights or attacks unhurt. As it turns out, when he tries to stop you holding him in place, or tickling him, Cédric uses those exact techniques. He knows to use a certain grip to push you away and a different one to pull. He knows to swim out his arms when you try to hold him. He knows to "shrimp out" by pushing his bum out and using his legs to get out af a hold. He knows to grab one weak finger, rather than your whole hand or arm, and pull it back when trying to make you let go of him or of something he wants. He knows to tuck his chin down so we can't hold his head. He knows to wait a little when he's really stuck and shoot out when he feels an opening. His body just does all those things entirely instinctively.

As I write this, I realize it sounds like we make a habit of fighting with him or holding him in place... Not the case. We noticed most of this in everyday situations, trying to play with him, trying to stop him taking something he shouldn't, trying to take a blood sample, etc.
During the Christmas holidays,we had an opportunity to experience this a bit more. We took him for hyperbaric oxygen treatments for which we have to stay in a small container for 90mn. He decided he didn't want to be there and had to be restrained quite a bit and I realized just how strong, fast, flexible, and efficient he is. He even went in once with the technician because I was sick. We're talking about a tall strong man who was trained in Gracie Jiu Jitsu while in the military. And even he came out amazed at Cedric's use of techniques and his ability to get out of anything.

Ever since I heard the "fist of monkey" story, I have therefore felt like Cédric has that defensive instinct. And ever since then I have wondered how come. To me, there are three possible explanations.
1. He just has a talent. Some people are good at music, or sports, or poetry, or drawing. No reason why he couldn't just be good at martial arts.
2. Because autism is at least a part of who Cédric is, I can't help but analyze things through that lense. I wonder if the way his brain functions is responsible for this in some way. Maybe having less complex thoughts allows for a more direct use of his body; less rationalization and more animal instinct. Or the opposite. Some people and reasearch suggest that the brain of autistic children is over developed, and we know that many of them deal with sensory input differently. So maybe Cédric just has a way more developed sense of his body and how it moves.
3. Hubby has also suggested the possible influence of epigenetics. This is a theory that even within one generation, what parents have learned and practiced can pass on to their offspring. As his dad has been practicing martial arts for years, it's possible that Cedric is genetically predisposed for them.

All I know is that if ever he develops the attention span and interest to sit in a class and learn a martial art, he will be a force to be reckoned with!

A small PS to add a digiscrap layout which shows my little ninja (I journaled in French about his ability to sneak up on us unheard and his defense skills):

Thursday, July 10, 2014

At your service

If you know us personally, or if you have read the other entries on this blog, you know that because of past events with our dogs have led us to decide to get a service dog.
We made this decision a year and a half ago. I won't get into the why, but you can read about it here: Dog Tales Part Deux
I concluded then that I would get back into price and financing, and I thought I might update, but I haven't talked about it since...
And three weeks ago today, Helio traveled North to finally join our family :D
So now it's definitely time to get back into it and tell you all about our journey to getting a service dog.

As I have a year and a half to cover, this will be a massive post, so I will try to keep it organized and clear (wish me luck).

The process (wait, funding, preparations):

Between late January to mid-April: the trainer tested a variety of dog for the right temperament. After a few fails she e-mailed us on April 14th 2013 that she had found us a puppy. She told us he was a purebred yellow lab donated by a breeder and roughly 4 months old. And that he didn't have a name yet, which meant we could pick :D.
We named him Helio after Helio Gracie, the founder of Gracie Jiu Jitsu (brazilian Jiu Jitsu). We had made a list of potential names and Dave had suggested it. I had agreed if we were getting a "yellow" male dog, as it comes for the Greek word for "sun" (helios). So when she said male yellow lab, it seemed like the best choice form our list!

In the meantime, I contacted all the local charitable organizations. We chose a pay service (I explained why in the post linked above) and we were ready to pay for the dog ourselves if necessary. The trainer is also very flexible and had agreed to a payment plan. But we decided to ask for financial  help.
The total cost for the dog including boarding, vet care, and of course training amounted to $13,560. As the training centre is over 900km away and the trainer brings the dog to us to train us for a week, there was also travel cost of about $1800.
I drafted a letter to explain why we thought we needed a service dog, why we chose this training centre and how much it would cost and sent it around. We were just hoping for a little help so we were happy when two organizations gave us $1000 each: Les Perles du Nord (a French women's club) and the Golden Beaver Masonic Lodge. But we were overwhelmed and speechless when I received a call from the Kiwanis Club telling us that they wanted to fund the service dog. THE WHOLE COST OF OUR SERVICE DOG!!
In our excitement we forgot to add the travel cost to the total we gave them, so in the end we paid those, which really seems more than fair, lol.

The waiting period was a big tough. We missed having a dog in our house. The trainer is a very busy woman who trains 20 dogs a year, certifies schools, and is working very hard at making service dogs more regulated and more available in Canada (and even the rest of the world). That is great and one of the reasons we are so happy we chose her services. The downside for us is that we were starving for news and felt like we were never getting enough...

As he was a puppy, the first 8 months were pretty uneventful. A dog has to reach adulthood before doing serious task training and community outings. So from April to December, there was not much for the trainers to report. We did call or email a few times and learned that he was very sweet and cuddly, very smart, a bit of an escape artist (they had to change his kennel lock 3 times), very gentle with and attracted to children. All in all, every time we talked, they told us that he was amazing, that he was one of the best dogs they had ever trained and that all was going very well.
I have to admit that waiting in between calls was really hard for me and I even worried we were getting scammed. I had absolutely no basis for thinking that, it's just one of these things my brain does to me. I have a vivid imagination :O
But every time we got news, I felt very excited and thought we won the lottery!
As of January 2014, we learned that he was still in great health, still doing very well and starting his public access training.

We also had a hard time getting photos, but bugged the trainer regularly and got a few over time, which allowed us to see him grow:

 This was in April, shortly after she got him (roughly 4 months old)

 This was in July (around 7 months old)

This was in May this year, right before he came to us (about a year and a half old)

During that whole period, as I said we had no dog. And we had seen Cédric be a little worried around big dogs. So after meeting the lady in charge of the St John's Ambulance Therapy Dogs team, we learned of a program that sounded great for us. The therapy dogs go to the local library for a program called Tales and Tails (or possibly Tails and Tales, I've never seen it written, lol). The goal is for any child with difficulties reading to practice by reading to the dog, without any correction or judgement. But as most of the dogs are large breeds, we starting bringing Cédric every Wednesday night, just to be around the dogs, see what he did and take notes, and maybe show him how to behave with the dogs. If I can pat myself on the back here, this was a GREAT idea! At first, Cédric wanted nothing to do with the dogs and just wanted to run around the library. And over the year, he started first noticing the dogs and paying some attention to them, calming down and staying around, then being more gentle with them and eventually hugging them right away when seeing them and enjoying the interaction. That was promising and encouraging as we heard a good amount of people saying their children never took to the dog and never bonded and we were hoping to help prevent that. It also allowed us to tell the trainer that Cédric liked to put his feet on the dogs, to play with their paws, to grab hair and touch noses. She took note of it all and made sure to get Helio used to all that.

We also used that time to prepare the house: we made room for Helio's crate in Cédric's room, we ordered a custom name tag, I had my Dad transform a barrel planter into a raised bowl, and I made Helio pillows.

Here you can see the bowls, the tag and one of the pillows :D

We also made sure to share everything with friends and family every time, and I LOVE how everyone responded. It felt like a gamble and every time, I thought maybe we should keep it to ourselves in case it didn't work out, but where's the fun in that... My Facebook posts with updates and photos of Helio are my most popular posts (hmmm, in retrospect, maybe I should be offended... lol). Each time, it made me really happy to see everyone's excitement and support in this new endeavour.

The big week (bonding and training):

On May 31st, Helio and his trainer drove over 900km to reach us in our remote Northern Ontario home. They left very early in the morning, hit an accident on the highway, and ended up getting here past 8pm.
When you pick up a puppy from a breeder, they are young and usually happy go lucky. But we had to keep in mind that this was an adult dog who did not know us and had also spent a very very long day in a car.
He was shy, cautious and very tired!
So the trainer suggested leaving him loose alone in the backyard while we talked. Slowly but surely, he came closer to us. She left shortly after. The idea was for him to bond with us and for that to happen, it was better if she left quickly. He spent the evening with us, sleeping really close to us, seeming afraid of the house and then slept the night in his crate in Cédric's room.

The rest of the week was intense:

- Sunday was put aside entirely to him bonding. Oddly enough, the most important thing was for him to bond with me, because as I will be his primarily handler, he needs to love me, want to please me and therefore obey me. So even before him bonding with Cédric, he needed to get used to me being in charge. I walked him, kept him close, gave him lots of love, and the guys even left us alone for a couple of hours so that I could make him visit the whole house without the impulsivity and noises of Cédric. He did seem quite scared, or at least cautious. Kitchen noises scared him a lot and he stayed a good distance away from Cédric.
All this, while completely normal and to be expected, is still a little hard to take when all you want is for this dog to be our best friend, especially Cédric's.
The two most important pieces of advice the trainer had for us, and that I kept repeating to myself, were "slow and steady wins the race", meaning things take time and try not to rush them, and "let him come to you". She told us, and we noticed, that Helio is a very cautious, very sensitive dog. She chose him for that to feel our moods, and mainly Cédric's. He won't be the kind of dog who is best friend with everyone. And coming at him too fast, forcing him to be close when he was scared, could have actually made things worse. So I concentrated on forcing him to be around, not too removed, to make him understand he was part of our family, but giving him enough space to observe without feeling overwhelmed.

- Monday morning, I started my training. We went to Walmart to start learning the rules and the handling techniques. It was a lot to take in, so I went back later and did some training at home. The trainer was really pleased with our bond, she said we had "the love part down", but Helio needed to see me more as a leader and obey more. That was true at home more than in stores, where I was really impressed with how calm and professional he was.
It is truly amazing to see the change in behaviour, concentration and obedience when the vest goes on!
I took him for the first time to pick up Cédric at the end of the day. Cédric didn't seem to care too much and Helio stayed on the other side or the backseat. I realized the car was a great place for them to get used to each other, being close but not in contact and without any risk.
I was also really happy to hear that she thought he was giving me looks of adoration and that the bond was really strong. I had never really thought about that being a problem, but I supposed a dog has a personality and he could have not liked us... She even seemed to worry about whether or not we like him. Again, it never crossed my mind that we might not, but again, who knows, sometimes the chemistry is not there. In this case, she chose him perfectly and we love each other :D

- On Tuesday, we went back to Walmart and added restaurant rules and behaviours to our practice. For hygiene and safety reasons, service dogs have to be tucked under the table, cannot be touched (verbal praises only), and are not allowed to eat or drink anything!! Not their own food, not what falls on the ground, NOTHING! Not even sniff. Labs being very food motivated, I thought this would be horribly hard, but he handles it very well. He lies there and sleeps. Again, colour me amazed. Still I made sure to practice the "leave it" command at home as I thought this would probably the hardest part of the test.
We had also scheduled to go to the restaurant that night, just Helio, the trainer and me, to introduce him to the members of the Kiwanis club who funded him and allow them to ask questions. They were almost shy at first, but in the end, I'm really glad we did. It was great to hear the trainer explain everything, I learned a lot too!

- Wednesday, we visited the pet store for a Kong and some training treats, went back to Walmart and McDonald's, but also took him to the dentist. In the trainer's experience, it is better for the dog to be familiar with the place and people before bringing him along with Cédric. She thought he might be protective of Cédric when seeing a stranger put his hands in his mouth... I would have never thought of that, but now, I'm trying to keep in mind that whenever we do something new, it would be good to get the dog used to the place before. I'm sure eventually, we won't have to as much, but while the relationship both with  me, his handler, and with Cédric is new, it seems like a smart idea.
And Wednesday night is also when the magic happened!! The #1 reason we got him in the first place was to allow Cédric a little more freedom and make our lives a little easier when walking together. As it is, we are always afraid he will take off and have him either in the stroller or in a vice grip. He likes the stroller, but it makes any outing a very passive activity for him, and he HATES the grip and tends to flop to the ground and refuse to move.
So the trainer got a harness at Walmart, one of the ones with a plush animal on it, and replaced their weak "leash" with a strong tether which attaches to Helio's vest. Cédric's is a grey elephant for which I still need a name (I'm weird that way, I like to name everything...). I put it on him the day before, expecting him to absolutely hate it, but he kept it on for a couple of hours with no complaint! So Wednesday night, we tethered Cédric to Helio and went out in the neighbourhood. It took us a few meters to figure out who should walk where. Well, Helio knew exactly what to do, but it was new for Cédric and I. I expected that to fail as well... but it was amazing! Cédric loved it, he seemed to feel free yet secure. We walked more than we ever have without him dropping to the ground or complaining. It was a very happy moment for us all (the trainer says it is always magical and she can't help having a huge smile on her face every time it happens!).

Here is what it looks like when we walk tethered. I've decided to call it "tandem walks" (told you I rename everything, I just don't like "tether" as much):

- Thursday saw more of the same (store, restaurant, work at home) to be really ready for our test on Friday. Helio also met Dave's parents, as they often watch over Cédric at our house and therefore needed to know the basic on handling him. This revealed that he indeed is very cautious and very attached to me. He was very protective of me, staying close, and growling and barking. As they are both very nice people and animal lovers, it was a surprise. The trainer suggested going to their house with him, so that he can meet them in a more neutral place than the house he feels protective of.

- And Friday was already the big day. After only 5 days together and 4 of training together, we had to take our test. Helio did very well, only fighting me a little when it was time to "down" at the cash register. But he didn't run after the ball the trainer through in his way, or get spooked by noises. He even did very well at two things we hadn't practice much at all: "a stranger hold" (I had to leave him with someone else and tell him to stay) and a "recall" (I had to make him lie down, move away, then call him to me). He also basically had a French frie (French fry? Who eats just one, lol) thrown at his face and moved around his body and he didn't flinch! The trainer took notes the whole time and made no comments. I felt it had gone well, but who knows, right? She didn't say anything and gave me an envelope saying the answer was in there. It contained Helio's certificate, plastic tags with his photo and his name which say that he is Cédric's service dog and some letters on their letterhead that explain that he is allowed everywhere (in case of trouble in a public place...).
We had passed and the most encouraging part is that the trainer said that even if some things still had to be perfected, she felt confident we were a good team and had put in enough work and effort. She thought she was leaving Helio in good hands, she had seen promising things between him and Cédric and she knew I would put in the necessary work to keep Helio certified (we do have to retake the test yearly).

We invited the trainer for a very relaxed celebratory supper Friday night, and she left very early Saturday morning. I honestly was sad to see her go, because I liked her very much and we had very interesting conversation. But also because I was worried about not keeping our team sharp, about messing things up or not knowing what to do. But she is only a text, email or call away and told us we can always ask questions. We've been on our own since!

The "Cédric-Helio" bond:

As I said, at first Helio was a little scared and overwhelmed by Cédric. He is not anymore!

The car was a great tool to get them used to each other. Day 1, Helio stayed far and Cédric paid no attention, day 2, Helio turned around and Cédric looked and reached down a couple of times, and since day 3 Helio snuggles right beside the car seat, often putting his head on the armrest and Cédric smiles, reached down to pet his head, nose, or ears. It's a very happy sight:

At home, as Helio relaxed, he started being very comfortable around Cédric and seeking him for play. The hardest part is just teaching him not to use his teeth (made hard by the fact that Cédric LOVES to put his hands in Helio's mouth) and to stay away when he is too excited. He is generally a very calm dog, but he is only 18 months old and gets excited a couple of times a day.

Cédric is also more and more tolerant of Helio. At first, he had many moments when he did not want Helio coming close. He was basically telling him to get out of his face! But as time passes, I see less and less of these moments. I also see an increase in him looking for Helio's company, laughing when he is around, and trying to interact.
I try to facilitate these interactions by making sure they stay positive, keeping Helio away when he gets too excited, making sure he uses his mouth as little and as gently as possible, telling them both when they do things right. And I absolutely love seeing them together. Look:

While on the bed, I even saw Cédric get up on his knees and give Helio a great big hug around the neck :D

The "effects":

As I said, the main goal was to keep Cédric safe with tandem walking. It does make us feel safer and and seems to give Cédric a sense of both freedom and security.

But people also report other "effects" on their children and we were anxious to see what would happen for our little guy.

The one I was most curious and hopeful about was sleep. I've read many times that the presence of a dog helps kids with sleep disorders or difficulties.
There are many factors that can affect Cédric's sleep but since Helio has been sleeping in his room, Cédric has slept well. He has not woken up in the middle of the night and has woken up very early much less than he used to. Of course, as I write this post (which I have done over the course of more than a week) he has had a series of 3 days where he woke up really early, but it is still better than it used to be.
The amazing thing we have discovered though, is that when he's asleep, noise does not bother him much at all. We thought he was a very light sleeper and have always been really careful not to make any noise once he slept. But with Helio, we sneak him into his crate when we go to bed, a couple hours after Cédric. Helio is very happy to go to bed because he gets a small treat and therefore wags like crazy, hitting the wall, the door, the metal crate, and making an incredible amount of noise. He then proceeds to do that strange floor scratching before lying down thing that dogs do. I still wonder what the evolutionary purpose for that is (warm up the spot, dig, release smells, ...?) but the one thing I know is that it is extremely loud. And so far, Cédric does not react to any of it whatsoever. One time he did sit up and reposition himself (my heart stopped for a second) and he went right back to sleep.
Helio has also barked and cried in the early morning when hearing us move around, and again, it has never woken up the little dude!!

I have not noticed a strong calming effect. Others have reported that the presence of the dog was soothing and calming and I can't say that we have really noticed improvement in that department. Cédric still has moments of high activity. He has been very happy though and we have seen few tantrums, so it might be that having the dog around improves his mood.

We also were surprised to notice an increase in language and vocalization. Cédric is pretty much non verbal. There are very few words he says consistently. But when Helio joined our household, we noticed a definite increase in the amount of vocal expression and even an effort to produce more different sounds. We're not talking about a miracle where he started talking in full sentences, but still we love hearing his voice and any move in the right direction is great.
And the connection was kind of confirmed for me by the fact that after only 5 days, Cédric said Helio's name! And he's been saying it often since. It may not be obvious to anyone, but to us who know him and are used to his repertoire, it is, and it makes me very happy. My favourite part is a resurgence of "je t'aime" (French for "I love you") which he used to say but had not said in a long time :D

And of course it has provided companionship. Cédric has an extra loving being to interact with. He laughs when Helio is playing, he goes to him and puts his hands in Helio's mouth, he puts his feet on him and rubs the fur, he plays with his ears in the car, ... He has a friend!
And so do I... I am so happy to have a furry friend back in the house and to get to pet him and cuddle.
Helio has been trained to provide deep pressure to calm Cédric and ground him. It seems a little too early in their relationship for it to be applied, though. Cédric doesn't seem to love when Helio is too much "on" him.
I have been enjoying it however. I love the cuddles and I have noticed that his leaning against me or sleeping on my feet calms me down.

The work in progress:

I don't want to give an unrealistic picture of this experience. Though it has been largely positive, there are aspects that have surprised us and that we have to adapt to or work on.

First and foremost, due to the distance, Helio was trained away from us and our bonding time and my own training was very short before the trainer had to leave. There are therefore a few things we need to work on and correct before they become problems.
Helio is amazingly professional when his vest goes on. He listens very well, he is quiet and discreet, and he pays careful attention to Cédric. But I have noticed that he gets spooked in entrances (double doorways in stores, malls, supermarkets, restaurants), at which point he pulls quite hard and sometimes panics and tries to in whichever direction. And he acts in a similar way in busy parking lots and open areas with large crowds.
So we have to work on that, expose him to that kind of situation a lot and make sure he calms down and is able to stay focused, especially if we ever want to be able to tether Cédric to him.

There are a few other things, but most of them are minor: the barking in the crate in the morning, a certain fear of visitors (especially men), jumping in the house or on me when playing (he is still young after all), getting a little too excited around Cédric and "nipping" at him (it's a playful nip, with a very gentle mouth, but it still would be better if he didn't).

Oh, and the hair! So much hair! He is a lab, need I say more.
I've invested in a better swiffer and if it pushes me to vacuum a little more often, it won't be a bad thing. But we are rethinking the choice of dark floors and black clothes, lol.

There is one aspect I did not fully expect: the attention from others. I knew it would attract attention, of course. I just did not realize how much and some of the reactions I would get.
Most people are respectful, tell their kids they can't pet him, say that he's cute, etc. I did notice that a lot of people say it loudly enough for me to hear, but when it's positive comments I don't mind at all.
Then there are the people that are also very respectful, but want to know everything (how old he is, what breed, what kind of service dog he is, where he was trained, whether he's in training, ...). I don't mind sharing, but sometimes I'm in a hurry and it's time consuming. And I'm thinking it will eventually get old... I read somewhere that someone has created a business card for her service dog and hands them out when people have questions and I like the idea!
And then there's the few but noticeable interactions. Some people ignore the vest and pet him, one even told me she knew she wasn't supposed to and was breaking the rules as she pat him on the head. Some people pry to find out what type of service dog he is, asking me if I'm training him for someone visually impaired (which I am obviously not), and one going as far as grabbing the card on his vest then the tag around his neck while I was talking to someone else, and exclaiming "ah, autism!".
Finally, there was that one woman at the dentist... It was the first time I took Helio in public tethered to Cédric. He panicked in the doorway and tried to turn around, and Cédric fell on his bum. She was in the entrance with us, behind us and just seemed horrified and from that point, gave me dirty, judgmental looks...
So I have to get used to all of that and remember to plan for extra time and extra patience!

So we find ourselves a family of four again. Dave is surrounded by 3 dark blonds (the trainer even mentioned that Helio and I had the same hair colour), and I am surrounded by my 3 guys (which is a departure as both previous dogs were females).
And one thing makes me absolutely convinced that Helio fits right in, that he is a true Gervais: the gas! Whether by nature, because of the stress, or because of something in his diet, Helio farts. He farts often, loudly and the stink is unbelievable. In public, it can be a little embarrassing...
At least, now, we can blame the dog ;)

Wednesday, April 30, 2014

Today is not the last day

Yes, it's the last day of the month of April...
Sure International Autism Awareness was only April 2nd and autism awareness month in Ontario is only in April.
But for those of us touched by autism (and these days, that's a lot of people), it does not end at midnight on April 30th.
So tomorrow and all year round, please keep talking about it and raising awareness, keep making efforts to improve tolerance and be kind and patient, and just keep us in your hearts and prayers. Your support makes all the difference :D