Saturday, January 14, 2017

Autism and Grieving

It's been an interesting few years. We moved to Leamington, then moved back to London. Leamington was a nightmare for us in many aspects, but we chalk it up to an experience that we will never do again.

One of the reasons we moved back to London was to be closer with our parents, our children's grandparents. Another is, my mother-in-law, Elaine, was fighting cancer. She put up a good fight for 6 years, but ultimately succumbed to the disease on the 26th of December. The day after Christmas, and the day before the anniversary of my sister's death. My sister fought acute lymphoblastic leukemia for 5 years. What really angers me is that, in the 30 years since my sister's passing, science still hasn't found a cure for cancer. 30 years. With all our scientific advancements. Still no cure. The closest we have are cancerous mice being infected with the AIDS virus. Sure - they're cured of cancer, but now they have AIDS. Mice with AIDS do not a human cure for cancer make.

Over the past few weeks, John and I have been grieving. The way you'd imagine a 'typical' person would grieve - if there really is a typical way of doing so. We cry, we reminisce, we get angry at the loss, and we comfort each other. But for the boys, it's much different. It's more internalized. They lack the words to express their pain in a fashion that comes so easily to others. On the surface, Dylan seems to struggle a bit more. He's always had struggles with emotional regulation. At times, he seems unaffected by it all, others, he spends his time hiding. And other times, he cries at the least provocation. His way of 'handling' grief is to swallow it down like a huge pill, and represses it by ignoring what happened. I have learned how damaging this form of grieving can be from my childhood. I wish there were a way to help him better handle his grief, but I am at a loss. I am not the best example of how to grieve as a child.

Dylan was very close to Elaine. She'd have him sleep over almost every weekend since he was 2 or 3 years old. Unfortunately, as her cancer became worse, sleep-overs became a thing of the past, but Dylan always held the hope Grandma would get better and things would return to normal. She'd take him to museums and plays, and is the reason Dylan is in theatre today. She helped him learn to swim, hired tutors to help him with the ability to write. She enrolled him into sports, but was never upset when he'd quit - she always knew something would 'click', and took a chance on an acting camp. Now Dylan is in his second year of theatre as a permanent cast member at the Original Kids Theatre Company. The best we can do now is to talk about grandma, both the good, and the sad.

Lucas is another chestnut. When I told him grandma had died, Lucas asked 'why?' We reminded him of how sick she was, and how she's resting in heaven. Whenever we mention her having passed, he always asks why. I don't think it's that he doesn't understand that it happens, but rather why it happens. When we remind him grandma is gone, he stares off into space, but I can see sadness in his eyes. When we get him back into focus, he shrugs and says "That's ok" - words he says to comfort himself. Some people would see that as perhaps cold, or uncaring, but grief affects autistics differently than neuro-typicals. Some autistics display a flat affect, noted in both their faces, and reactions. But it belies their inner pain. Neuro-typicals tend to assume these reactions are a lack of empathy, but they couldn't be more wrong. Autistics have empathy, and sympathy - sometimes, too much of it to handle, so they clam up, and suffer in silence. 

Eventually, the pain of Elaine's loss will ebb for all of us - it'll never go away, but the pain will sting a little less as time passes. We will hold onto the wonderful woman she was. How she touched our lives, and those of others. She was truly phenomenal as a wife, mother, grandma, and mother-in-law. I am grateful I've known her for half my life.

If there's one thing of note, it is this: autistics hurt like everyone else. They may not be able to show their inner pain, but never assume autistic do not feel pain, empathize, or sympathize. They may even feel things deeper than a neuro-typical. Autistics deal with their pain in their own way, and it's not always the socially accepted way of mourning. And if there is one person who would smile and accept the way the boys choose to mourn, it would be Elaine.

Tuesday, January 21, 2014

It's Been Awhile...

It has been ages since I have blogged, it seems. That's just due to the preparations to move, the holidays, and getting other things ready to transfer to Leamington. Busy, busy.

We have not yet sent Dylan to school. On the last day before the holidays, his class made a big to-do about his leaving. We had no set move date at that time, but Dylan was mentally set on moving. So when the holidays were over, we didn't send Dylan back to school, as this would cause him great anxiety and behaviours. Now that we know when we are moving, I am able to work with Dylan to prepare him for his new school.

For once in a long while, we had a family vacation last week. Our last family outing was to Canada's Wonderland. Since we had no place to go for Christmas Eve and Christmas, we had our Christmas down in a hotel in Leamington. We weren't sure how the boys would react but, lo and behold, they did amazing! So, we decided to spend some time out of John's vacation to go to the Great Wolf Lodge in Niagara Falls. It was wonderful, and I am hoping for it to be a yearly thing. Sure, we got a noise complaint on our first night, but how quiet do you expect it to be with two vibrant, special needs boys, in a kid's resort? People need to take a pill, or not go to these places if they have issues with kids and their noises...

So it's great that the boys are fine in hotels, and since our move will be delayed (packing and loading on the 24th, unloading on the 27th), we have to stay three nights at a hotel in Leamington. Thankfully, the boys are already familiar to this hotel, so I'm expecting little to no behaviours.

In other news, Lucas had a dreaded dentist appointment today to resolve a rather large cavity in his back molar. We do our best to brush his teeth, but it is a battle. He goes to a specialized dentist office meant for children only, and those with special needs. Unfortunately for the staff, Lucas is their most difficult patient (yes, they told me that). He's fine when we talk about the dentist on our way to the office. He's fine in the waiting room. He's fine when he sits on the chair. Then - all hell breaks loose. It's like he is fighting for his life when they try to look in his mouth. He screams so loud, it disturbs their other patients in the waiting room. Apparently, one mother even complained! To get a good look at his teeth, they have to tie him to a board, and apply the gas mask. It's a visit that leaves both Lucas and I exhausted.

But today went well. The last time we were there, they tried to sedate him with Gravol. Didn't work. So this time they used a liquid tranquilizer taken orally. That was the biggest fight of the entire process. After we got it in, they left him in the chair to watch Sponge Bob. I could tell he was getting dopey by his smiling and laughter. Then, we moved him to another room to watch Sponge Bob. They were able to take x-rays! They were able to put the 'turtle nose' (gas) on him! They kept the lead coat on his for extra comfort (the dentist said he did more research on autism and read it helps some kids). He didn't cry, or scream! The only thing he kept doing was raise one arm. The dentist told me this was common, because it feels like their arm is floating.

After we were done, I had a quick talk with the dentist. He has more work to do on some small cavities, but he has to look up a bit more on port wine stains as excessive as Lucas'. PWS are a malformation of the capillaries, and if he somehow bursts the capillaries, it could be bad - excessive bleeding and bruising, and worse, infection, damage, and worsening of the stain. I also learned that I had better become good friends with Dr. Foley - a maxillofacial dentist. Dylan has too big teeth in a too small mouth. And I just learned that Lucas' jaw is out of line and he has a 'tongue twist'. Not sure what that means, but that could explain why he did not do well with breastfeeding. I think it also might contribute to some of his speech delay. The dentist told me no, but...I have hope maybe it's that. Maybe. But overall - a great experience. Even if he struggled to walk afterwards and fell flat on his face. Even though adults were laughing at him and telling him to 'go home, you're drunk'. Even though he spent most of the day flapping. At least I know, when he's flapping, he's happy.

Tuesday, October 22, 2013

Oh dear Neptune, we haven't even reached the teens yet!

Since Dylan has started school, we have been noticing a steady decline in his emotional regulation. He's always struggled, he is the type of child that often makes emotional mountains out of molehills, and it doesn't help that he is hyper-sensitive, wears his heart on his sleeve like I do.

Tonight, he had 5 separate emotional episodes between when he got home at 4 and we sent the boys to bed at 9:30. Usually, their bedtime is 10, which is the earliest we can send them to bed, or else they wake at ungodly hours of the morning.

First it was a blow-out because Lucas was smacking while chewing - which he always does. Then it was homework. Then it was that Lucas was playing his 3DS too loud, then it was about having to go to bed early, then I mentioned his past respite worker which sent him over the edge.

I'm at a loss as to what to do. Even if I lessen demands, work through his issues, and validate his feelings, it takes almost an hour each time for him to calm down enough, and then the tiniest thing sets him off. It's like walking on eggshells, and we're not even in his teens yet.

It's exhausting for both John and I, and we feel frustrated and helpless as to how to help Dylan. And then, in the back of my mind, I think of that person John worked with, whose autistic grandson hung himself at 10 years old. Dylan is 9, and I am petrified something like that could happen.

When I inquired about a program for kids with emotional issues at CPRI, intake told me that Dylan would have to be a danger to himself or others. I know he isn't a danger to others, and his self-injurious behaviours are apparently 'not severe enough'. I'm going to have to go through his doctor, because I'm pretty darn sure there has to be some sort of mental health program that could help. But last time I spoke to his doctor, she wanted him to see a private therapist, who didn't work with children with autism, but thought Dylan would be a 'new challenge' to her. Not to be offensive, but I'm not guinea pigging Dylan with something as important as his mental well being.

Sigh. It hurts me that he is hurting, and I'm not able to make him better. 

Being 'high-functioning' does not mean your autism is less pervasive and serious in your life. 'High-functioning' kids have their own unique and challenging issues to deal with.

Saturday, July 27, 2013


I've been catching online that Jenny McCarthy will be opening her mouth again on the View, I think. I have no clue when, nor do I care to find out when. All I know is, I'm going to feel a shudder down my spine, and my palm will tingle with the urge to facepalm. That's how I'll know she spoke.

It's not the message, per se, that gets to me. It's her. Imagine someone with a bit of fame opening their mouths and speaking about something they know so little about, and tries to push it out like gospel and claim they speak for all mothers. That's how Jenny McCarthy 'do'.

I've heard her speeches. I even read her book. I must say, her son is the first autistic child I have ever heard of who had a heart attack as a characteristic of autism. She lacks cohesive thought, or even common sense. She comes off uneducated, though she acts like she's spent millions of hours on Google (okay, I'm being cruel), and obnoxious. I am turned off just hearing her speak. And sadly, I am not the only one. Far from it.

If not for some of the people I have come to know online, I'd have no respect for parents who have children who were vaccine-injured, or have co-occurring medical conditions to their child's autism. Why? Well, because without them I would have assumed all mothers with vaccine-injured children thought like Jenny McCarthy! But thanks to those moms, I have learned a lot, come to accept and agree with some of what they have shown me, and I can say I respect them. Though their journeys are different than mine, we do share a lot in common and I learn from them as I hope I might teach them a thing or two myself.

It's interesting, however, that so many intelligent, well-learned parents support Jenny speaking and even support her saying she speaks out for all parents who have kids with autism. I admit I am embarrassed when she speaks. And insulted when she says she speaks for mothers like her.

I read people saying 'At least she's getting the message out there' or 'at least she's opening a debate'. But, do we really want someone sending out a message for the sake of sending something out there? Do we want just anyone starting a debate? Shouldn't we ask a little more from people who claim to speak for all of us?

Jenny McCarthy popped up around a couple crucial times in my boys' diagnosis journey. And, unfortunately, it made things more difficult for us. People would scoff/snort and say 'Oh, that stuff Jenny McCarthy is saying?', and the doctors who believed I was just following the 'popular media' surrounding her, etc. etc. It's just a nightmare when she pops her head out from under her rock.

No. I'd even take those insulting women with their heads so far up their butts they can't see straight from 'Thinking Mom's Revolution' over Jenny. At least they have the knowledge to share. And they would help some people...

I just wish she'd go away.

Here's to being ridiculed for having kids with autism for a few months...thanks, Jenny!

Thursday, June 27, 2013


Um...interesting occupational therapy appointment today. I'm glad John was there, and I was able to be a good girl and control my temper.

See, we've been working on Lucas' feeding by expanding his food repertoire, as it is quite restricted.
We've had 4 sessions where you have a preferred item on a plate with a non-preferred item. Then 'play' with the non-preferred item to make it fun, and approach the mouth. Got it.

Get rid of pacifier and bottles. Got it.

Occupational therapist saying she absolutely will no longer work with Lucas if he is still using his paci and taking his nutrient bottles. She said that since it's not medically indicated, there is no need for the nutrients. Oh, and if he loses like 10lbs, then they might review the formula.

Okay. What? Can a therapist from a government-paid services refuse to help a family because they don't agree with the parental decisions we make?

We want him to lose 10lbs before taking action?

I have said over and over again:
We don't want a 4 year old on a paci. We don't like it. It's stigmatic. But we can't find anything to replace that behaviour in a more functional and appropriate way.
Bottles are cut back and are given only twice a day. Neither of those times are near meal or snack times.
I don't quite understand how this is a correct way to help parents. We have noticed that Lucas is seeking his pacifier significantly less. Significantly.

The therapist gave John and I a copy of her latest report. We both read it while she was jotting things down in her file.

The report was accusatory, condescending, and flat out rude. I looked at John and rolled my eyes at him. The main insult comes from her 'consequenses' column in the report. She said that Lucas would not have such severe language disorder if we had only taken away all pacis early on. That, as we continue to allow him access, we are ruining his chance of ever (emphasis on ever) speaking. There you have it. Pacifiers, no matter how little a child uses it, will mess your kid up for the rest of their life. My word of warning to all parents out there. If blogger had an eye-rolling icon, I'd be inserting one here.

Despite being figuratively slapped in the face, I played the good-girl until she left. As he locked the door after showing her out, John turned to me and said 'That report pissed you off too, right?' It was nice to experience how many professionals treat their clients.

On a good note, I hope the therapist felt like putting her foot in her mouth. While she was there, Lucas was showing his common behaviours - flapping, fleeing, drop/flopping, and punching his head. All of them. I enjoyed the odd look on her face. That's right, bitch, he does have autism. Just because a duck doesn't quack within a 40-minute time frame, once a week (if we're lucky), it doesn't mean it's not a duck.

So, what is it that occupational therapists do again? Help getting kids to eat more? Fail for both boys. Sensory regulation? Not one time has anything been mentioned other than filling out a form only to have the OT to score it and condescend as though I fudged it because Lucas has so many sensory issues. So far, the only positive I have ever seen in connection with OTs is on Dylan's IEP, saying that he needs a scribe.

I can't help but wonder - is this all I get? Is this what I should now expect? With Dylan, nothing was anything as close to being difficult. What has changed so much that parents have to fight to unclench services from the government's fist?

I'll be honest. I envy therapy from the US. Even worse of me, I envy that kids who can run circles around both my sons are getting services and not them.

Because we have universal healthcare, there is no need for true health insurance. We tend to get our insurance through work, you know, to top things off that the government won't pay for.

So, I checked out John's plan for services. He used to have a 'gold package', that was quite expensive, but was amazing. Loved it! But now they have a one-side-fits-all plan. Guess how much I can claim a year for physio! C'mon, take a guess! Give up? A whopping $400/yr. But, it's better than nothing, I guess. I'm just so tired of trying to get attention for services for Lucas. I'm tired of feeling like I fail him everyday. Sigh...

Tuesday, June 11, 2013

What the what? Ped. appointment

Well, I must say, I was surprised this morning after going to the pediatrician's. It is like I went to a completely different doctor altogether.

Bringing you back to the beginning of my relationship with the new pediatrician. It was a little appointment where she listened to our concerns, we met, you know, the little 'getting-to-know-you' appointment.

The second appointment I left in tears. Of course, I blame my French genetics. I cry when I am sad, happy, frustrated, really angry, etc. I was both angry and extremely frustrated. I played with the idea of just getting a different doctor for Lucas. She was refusing to diagnose Lucas with anything. She said he had both Sturge-Weber and autism characteristics, but was refusing to put any of that on paper. She didn't want to 'label' him.

Today she was singing a different tune, and she surprised the heck out of me. She asked how I was, and how things were for Lucas. She asked if we had recent services and how they were going.

After all that, she told me that she had done a lot of research. She had contacted his neurologist, geneticist, and plastic surgeon, and they all agreed; Lucas has Sturge-Weber Syndrome.

She explained the previous appointment. It's not that she didn't want to help us, she just refuses to give any diagnoses until she is completely satisfied that is what the child has. She has to satisfy all her doubts.

She then told me that many parents come to her with the concern of autism. She believes that autism is over-diagnosed these days, and that parents are given the diagnosis to quiet them down, and that it is sheer laziness on the part of the doctor to just throw a label onto a child. She said that was why she refused us last time, but is giving us a diagnosis this time.

She believes Lucas' 'autism characteristics' are part and parcel to his SWS. Many kids with SWS have autism and behaviour issues. I would have liked to have 2 separate diagnoses, but I'm not going to look a gift horse in its' mouth at this point. I can still use the autism diagnoses from the two doctors who originally diagnosed him with it.

I found it comical that she also added severe expressive communication delay. I wasn't about to say anything  about it though. Lucas already has a diagnosis of severe expressive and receptive communication disorders.

She wanted to check something out that had her concerned when she had walked into the room. She tried to get Lucas to use his left hand and foot to throw and kick a ball. She checked his reflexes with the hammer, she got him to give a high 5, to squeeze her fingers, etc. I had told her that we had the physio over, and the physio said that he had regressed, but not severe enough to need help.

The doctor told me that she had noticed Lucas' unsteadiness when she came into the room, and how he is only using the right side, his left side was significantly weaker, and he did seem to have regressed. It is on the opposite side of his major port-wine stain. Many kids with SWS will have weakness on the opposite side of where their PWS is. She asked me about 'seizure-like' or 'stroke-like' incidences. I told her not that I know of. She told me that there was a possibility of either of them having happened without us knowing. I reminded her that his EEG was normal. She told me that EEGs like the one we did show only 2 things: brain abnormalities, or a seizure at that very moment. It may have been clean at that time, but it doesn't mean he's not having mild seizures. It was just so odd to have him regress like that.

We then got to talking about Lucas' mental retardation. Let me just get this out there - as long as it is meant in a medical context, I use 'mental retardation'. To me, 'intellectual disorder' or 'intellectual delay' are insulting. My kid's intellect is not what I am questioning - he is clever, smart, curious. What I am questioning are his mental functions - such as functioning, adapting, learning, and understanding. Whether or not he is 'smart enough', I don't give a damn. It's his mental capacities that matter to me. So, I will use mental retardation, because his mental capabilities are what matter.

Back to the appointment. The doctor and I talked about whether or not Lucas has mental retardation. She asked me where I thought he was, where would I 'put him'? I replied mild. She felt like it would be a good idea in terms as therapies/treatments to know what level he is functioning at. So, she said that she will send out a referral to TVCC for him to be seen by a psychiatrist. And she apologized that there will be, sadly, a wait. Gosh I *hate* our system.

Well, I came out from the appointment happy. I had a piece of paper in my hand, that can give me access to services for Lucas outside ever disappointing TVCC wait list black hole. I now have access to regular neurological supervision. I'm getting testing done. I have another answer for the issues outside autism. I have, for the first time in quite awhile, hope.

Friday, June 7, 2013

I hate our government...

I usually feel blessed to live in a country that provides free healthcare. Our hospitals are great and house everything of modern medicine. We have wonderful doctors and specialists. When it comes to our health, it is wonderful.

Our private practice doctors are lacking, or perhaps it's just that I am used to Dr. Carson's care and all other pediatricians fall short.

But when it comes to our children, we suck. Your pegged child better be a circle, because our government only services children who are circular. Who cares about the ovals, squares, or crescents?

Today, I was once again reminded how shitty our government is. Lucas was seen by his physiotherapist. Now, when I say 'his' physiotherapist, I mean he is on her caseload, and she saw him only twice - today being the second time.

She observed him. I told her my concerns, and that he has regressed. She told me that sometimes this is common in children with Sturge-Weber. So we did the same things that she tested on her first visit. And she did notice a regression.

So, she started to blame me for not practicing the suggested activities she had suggested a year ago. I told her that I do, but I generalize it. One of her suggestions was to make him try to balance on one foot. I do that - I try to put on his shoes while he is standing. She told me to do 'reps' of those daily, but not make it seem like it's exercise. What?

Then she said that Lucas' muscle tone was weak, and that if she did a standardized test on him, he would be considered below the normal range. This did not surprise me.

Then, at the end of the appointment, she told me again that kids with SWS are prone to physical regressions, and stroke-like weaknesses. She reminded me that I should implement the suggestions she had e-mailed me a year ago. She then told me that there was nothing she could really do for him, so, she's going to discharge him.

I asked 'If he has weaknesses, is prone to regress, and has a disorder that it's all a common concern, why can't he get some physiotherapy?'. She told me that he has to be 'worse off' in order to get services. What?

I've seen/heard of kids who can dance ballet, participate in skipping competitions, and who have the physical abilities to do what everyone else does, getting services. The difference? They live in the United States.

I think I have to stop going to the ASD boards on BabyCenter, because all it does is make my blood boil. It's not that I am not happy for those parents and their kids, it's just that I am pissed and can see the blatant lack of proper services for our children. So Lucas? He's SOL. That's great. That's just great.

Thank you government of Ontario!