Showing posts with label spd. Show all posts
Showing posts with label spd. Show all posts

June 27, 2014

How To Explain Autism to a 5 Year Old

I've seen a lot of talk recently about people debating if and when they should disclose their child's autism diagnosis to them. I am firmly in the disclosure camp, and the sooner the better.

I'll use an analogy to explain why. Let's pretend autism isn't in your brain, but a differently coloured ear that hears differently. Kids don't really notice colour, but they do notice differences. So they see their two ears, but one is blue. No one else in their family has a blue ear and they can see that. This blue ear means they hear things at a different pitch from non-blue ear people. They can still hear just as well, but the pitch is off, which means sometimes sounds get scrambled. They can see other non-blue ear people have entertaining conversations and laughing, but they can't always follow. They start to feel left out. People assume the blue-eared people don't understand, so they simply stop including them. The blue-eared person starts to wonder what is wrong with them. They think they are flawed.
Keep in mind, there is nothing inherently wrong with the blue-eared people, they just hear slightly differently. With time, they can also be taught to hear different pitches differently, or people make an effort to adjust their pitch for the blue-eared people.

Snap back to reality and autism is no longer about blue-eared people, but I hope the above makes some sense. In general, when you don't explain why someone is different and what that means, the conclusion a child will almost always make is that there is something wrong. Children take on a whole lot of different emotions and issues that have nothing to do with them. The same way a child will blame itself for a parent's divorce, they will blame themselves when they have problems understanding or making friends, unless you explicitly clarify things for them. (And even then, they still might, but you can at least try to make sure they don't blame themselves)

Explaining autism to them - both the gifts and the downsides - gives them the language they need to explain it to others. Over time, it will give them the confidence to be able to advocate for themselves. Unfortunately, as much as we would like to, we will not always be there for our children and they will have to face this world without us. They need the tools to be able to have their needs met when you're not able to fight for them.

So how to do explain autism? Well, I use opportunities to slip in little factoids now and then. If we're waiting for the bus and have nothing else to do, I say, "hey, do you know you're Autistic?"
He usually says, "yeah" now. "You know it means your brain works differently from other people's?"
Sometimes I tell him my brain is like his, but not dad's. Sometimes I tell him it's why he struggles with some things, but also has an amazing eye for details.
Then I leave it at that. Because at his age, I don't think he needs tons of details. He just needs to start learning the vocabulary, and to know there's nothing bad or wrong about him, just different.

I think about how I grew up without a diagnosis and how confusing it was for me. I blamed myself for so many things. I don't want him to have that experience. Knowing how his brain works means he can work with it, rather than against it, and he can learn tools or coping skills to be more effective.

Explaining autism (or Down's, or SPD, or Apraxia) is not a one-time thing. It's an on-going dialogue based on acceptance and trust.

June 23, 2014

How I Knew Something Wasn't Right

I pretty much started this blog after the Little Man got his autism diagnosis. Not to say everything was peachy before then, but I wasn't chronicling our experience at the time. Every now and then people ask me, "what were the signs? How did you know?"

Honestly, I didn't know. We knew something was very different about our son, but not what exactly. Actually, because doctors were giving us a hard time, we thought there might be something wrong with us!

First off, I speak from a position of great privilege - I have a degree in Linguistics. Because of my degree, I studied language acquisition and childhood development. I studied the brain and learning disabilities. I then volunteered with Deaf children and learned speech therapy techniques. So I had some experience working with non-verbal children and what "normal" development should be like.

From the beginning, my son was not "normal." As a newborn, he was very alert, like a wise old soul. This was when he was quiet, but otherwise he was screaming. When quiet, he stared at lights and didn't look at us much. We called his name and he did not respond. We actually thought he may be deaf, so we had his hearing tested. It was fine.

His head grew very large, very quickly (a sign of autism for some), so we had that monitored. He seemed to space out now and then, so we had him tested for epilepsy. Nothing there.
He made a few noises, but didn't babble. He drooled a lot and flapped when excited.

For me though, the biggest red flag was the lack of speech. Because of what I learned about speech therapy, I was using elicitation techniques with him from birth. He never imitated us. We did baby sign, which he responded to pretty well. We could tell he understood us, but wasn't reciprocating.

He sat quietly and spun the wheels of his trains. He got down on the floor to look at the wheels move. He flicked his fingers in front of his eyes. When we took him to the park, all he did was sit in the sand and run the sand through his fingers and squeal loudly. We couldn't put him on the slide. If I stuck him in the swing, he sat passively, as if waiting for it to be over.

Aside from not speaking, he couldn't eat food. He was constantly putting stuff in his mouth, but not food. He would choke and gag on the baby food. Or he would shove a whole bunch of something in his mouth and hold it there. (That's more SPD and Apraxia than autism)

So I took him to a bunch of doctors with these issues and was spoken to like I was crazy, like I was doing something wrong to cause these things. What parent doesn't want their kid to eat? All he would eat were crunchy things that would melt in his mouth so he could swallow them whole without chewing.

It wasn't til he was over two and a half that he got diagnosed as autistic. It wasn't until he was over three that we got the Apraxia diagnosis. Not for lack of trying!

I wish doctors understood the power of a mother's intuition. No one wants there to be something wrong with their kid. We all want our kid's lives to be easy.  I wish simple things did not have to be a struggle for him. That doesn't mean I don't accept him as he is, where he is right now. If his path could be easier, I would welcome it. I think any parent can relate to that. I wish doctors did also. When a parent comes with concerns, they need to be taken seriously. I know my child best. You know yours. If you are concerned about your child, keep fighting, keep searching until someone hears you. 

June 02, 2014

Make Up and SPD

I have never really worn make up. When most teens go through some sort of experimental phase, I couldn't care for it. My sensory issues are such that I feel a great compulsion to have clean teeth and brush them often. I then MUST have lip balm, but only a few specific brands are tolerable. And that is it. Most of my life, I've shown my natural face without a touch of make up.

For special occasions I have tried really hard. The problem is I feel make up on my skin. Most of the time, it makes me feel itchy. I rub my eyes a lot. I lick my lips. You can imagine it's extremely hard to keep any sort of make up actually on my face without smudging it off.

Until now!

See, just knowing I have SPD has made it much easier to cope. I still have adult acne and wanted some help covering my blemishes. I decided to go to The Body Shop and have them teach me. I also needed someone to pick the right colours for me (it's absolutely impossible for me. I don't know how they do it). I decided to forget everything I ever saw my mom do with make up and start from scratch.

So I made an appointment and had a nice young lady show me everything from beginning to end. What I like about The Body Shop products (aside from not being tested on animals) is they don't upset my sensitive skin. The make up artist asked me what kind of coverage or look I was going for and we stuck with the most natural possible. In the end, I just got a simple BB cream and powder that matches my skin tone, and a mascara. I already had lip liners and gloss - which is the most I'll wear on my lips, otherwise I feel it and it bothers me. I bring it with me every day to work, but never actually reapply it. lol. I mean, com'on, a girl has to eat. What's the point of putting more lip gloss on if you're just going to eat and drink?
I'm very pragmatic, as you can tell.

The products I got just smooth out and even out my skin tone and they don't feel so heavy that I have to keep touching my face. The mascara just enhances my already naturally long eye lashes - and it is still a challenge to not touch my eyes, but I feel I am better for it. I really shouldn't be sticking my fingers in my eyes all day anyway. And that's it! I feel a bit more grown up. I actually think it's helping my skin because I am forced to wash it more often and touch it less.

It seems that just the right amount of make up can be tolerated by my sensory issues and may even help me in the long run.

make up and spd on OneQuarterMama.ca
Me being silly after coming home from the Body Shop, about to wash my new make up off

April 28, 2014

Tracers, Auras and Other Sensory Overload Experiences

Mashable put together a nice collection of autistic/sensory overload experiences on video. Each video tries to simulate what it's like to be autistic. It's really hard to capture sensory experiences on video - it's the sort of thing where it would be great if people could just spend time in each other's heads. But since we can't, these videos are close enough.

I especially like the taking a walk and Wal-Mart visit videos. My vision does not become as blurry though. For me, I see what I call "tracers" and "auras" (and not the fancy coloured New Agey auras). Also, these experiences are not as fun as they might sound!

Auras are easy enough to describe. It's a fuzzy glowing light, a halo, around people and things. Everything.

Tracers are like a bad seventies music video where lines of light follow any movement of a person or object. So, let's say I were to wave my hand in front of my face. There would be hundreds of hands just like it, like a paper fan spreading out, following its movement.

I also sometimes see flashes of light go past my eyes. I have had my eyes checked by an ophthalmologist and I have had brain scans. There is nothing physically wrong or different to explain why I have these experiences. It's just crazy sensory overload.

Seeing either or both of them usually mean I am tired and/or over stimulated and need to get away to a quiet place quickly. If stuck, I will become dizzy, get a headache and then nauseated. My body will start to ache. This happens often in shopping malls, especially crowded ones. I cannot think straight.

Because of this, I usually stick to small stores. I do a lot of my shopping online. I also completely refuse to buy Christmas presents for anyone but children now - you will not see me in a store at holiday time! Instead I "gift" donations to charities of people's choice - again something easily done with a credit card online and I'm also doing something good. North Americans have too much stuff anyway.

Looking at me, you wouldn't think or know anything is wrong. I continue walking around like nothing is happening, maybe rubbing my eyes more than usual. I may have to concentrate more on where I'm going so I don't run into things and this might make it harder to approach me. I typically don't want my thoughts disturbed, so those people in malls trying to get you to sample something are even more annoying to me.

Add to that the annoying mall "muzzak" and scents from perfume, soap or candle shops and I start getting agitated. Basically, if I have to go to a mall, I run in and run out, getting only what I really need, so I don't get to the overload point. Knowing my limits and having them respected is really important to being able to be productive. Otherwise I could be ruined for days.


April 14, 2014

Brushing Protocol

wilbarger brushing protocol therapressure brush on OneQuarterMama.ca
Our Therapressure therapy brush
We've been doing the Wilbarger Brushing Protocol with the Little Man for almost a month now. The Wilbarger Brushing Protocol, also known as the "Brushing program," or just brushing, for short, is a therapy for sensory processing issues that was created by occupational therapist, Patricia Wilbarger.

It's used for people who are tactile defensive, and can be part of a wholistic sensory diet.

The Little Man is an interesting mix of sensory seeking and defensive, and it contributes greatly to his anxiety. It has caused a lot of problems with eating (limited textures, gagging), speech and general motor skills.

The therapy consists of brushing the person with a soft-bristled therapy brush roughly every two hours each day for a few weeks. This is followed by gentle joint compression. It takes 2-3 minutes to do and feels like a nice massage. It is taught by an OT to the parents and teachers who will do it, so that we know it is done correctly. (There are some videos out there that show people the technique, but I don't think it's a great idea to do it without professional help since doing it wrong can actually feel very uncomfortable and make someone more tactile defensive!)

After 2-3 weeks of daily therapy, the OT will re-assess the person and see whether it should be continued or tapered off.

I had heard a bit about it before this was proposed for the Little Man (it was proposed for me and my SPD, but I couldn't find an OT to teach me when I looked). There's not tons of science or studies backing this practice up. Nevertheless, we went into it with an open mind, figuring it doesn't hurt anyone (it feels really nice actually!) and the brush cost us $5.

Our OT set up the schedule and with the help of the staff at school, we've been doing it daily on the Little Man. To our great surprise, we've noticed A LOT of changes very quickly.

Since we started the brushing protocol, he's been:

-more calm, will sit with us
-asks for hugs
-sleeps better
-eats better (larger quantities and more textures)
-talks more
-drinks water (!!  From a cup!!)
-more focused
-seems less anxious
-seems more confident
-more self-aware when upset and able to let us know verbally

I think that him being less anxious means he is better able to relax and eat. I know I spent a great deal of my childhood very anxious and eating was very anxiety-provoking to me. Also, when you can't handle all the different things assaulting your senses all at once, it's hard to find a sense of predictability or stability in the world. The world feels very dangerous to someone with SPD - or at least it did for me growing up and I'm pretty sure my son has experienced a similar sentiment.

As a bonus, the Little Man seems to really enjoy being brushed and the OT agrees with the results we've been seeing, so we're going to continue for the next few weeks.

If you know a person who is tactile defensive with Sensory Processing Disorder and/or is Autistic, brushing is a therapy that doesn't take a lot of time or investment to try and see if it will help. It's just one part of a well-rounded OT program and easy to do at home.

As for me, I need to book more massage appointments for myself :)

January 27, 2014

I Don't Like Love - Sensory Issues Explained

TRIGGER WARNING: People touching others without express consent

Every once and a while I get reminded of a date I had with Hubby, very early in our relationship. We decided to meet at a restaurant and I went to find a seat to wait for him. I didn't know, but he was close behind me, so he came up from behind and touched my hair. My reflex was to snap my arm back, with my hand in a fist, and whack whoever touched me without permission. I ended up punching him square in the face and giving him a bloody nose.

Little did he know, I hated having my head or hair touched. Little did he know, I hate people touching me from behind. I hate people touching me without permission. I hate strangers touching me. I use the word, "hate" because it really is a strong aversion.

After the bleeding stopped, and I explained my issues, we still had a nice dinner. And evidently, he never tried to sneak up from behind me again. But it was nothing personal.
My quick reflexes would be very helpful if I were actually being attacked, but they are a bit of a mood killer otherwise, I must say. Still, I'll explain a little bit about why I react that way and maybe you can get an idea how it feels.

I should remind people that I have Sensory Processing Disorder (SPD) and not just autism, so that could explain my extra sensitivity. Also, my sensory issues have changed since childhood, meaning I'm not quite as sensitive as I once was.

For as long as I can remember, I hated having my hair or head touched. Getting my hair brushed and styled was something to endure, not enjoy. My mom loved braiding and tying my hair. I hated it. The best way I can describe it is when you get the hebbie-jeebies - being touched gave me a feeling of pain, shivers and distinct uncomfortableness. It's just a yucky feeling.

Light touch is worse than deep touch. I enjoy a rough scalp massage, like when getting my hair washed at the salon. But a soft caress gives me the most disgusting feeling. So did long hugs. It could be so bad sometimes, that it actually made me vomit.

couple hugging in street on onequartermama.ca
What looks like a loving hug can feel like torture

So not liking soft kisses, caresses and other common demonstrations of affection make it look like I don't like love. When it's a child, it looks like the child hates you or finds you disgusting. It offended my mother greatly. My mom always wanted to smother me. Or at least, that's how it felt, because she didn't respect my bodily integrity.

It is always a worse (or more pronounced) sensory experience when the activity is forced upon me. So a surprise touch or one where I did not give consent is worse. In other words, a hug I did not want will feel more disgusting than a hug I want. Again, this was all much worse as a child since I could not get away from my mother. I learned to ignore my own feelings in order to make her feel happy. I will not go into the ramifications of how that sort of behaviour affects a person when it comes to interacting with other people, but I think you can guess. Suffice to say, it made me numb to some extent, and I have done things with people without feeling a thing or caring what was happening to my own body. 

My son, who seems to be my little sensory carbon copy, shows the same signs of having the same sensory issues as I do. He is a bit different, but he's not big on hugs or kisses unless it's on his own terms. If I had my way, I would just love to squeeze him and cover him with kisses, but it's not about what I want because I know what it feels to have people do things to your body against your will. This is why I always ask. ALWAYS.

The point to take away from all this, is that having a sensory issue where touch can be a problem does not mean the person doesn't want to be touched or loved. It means it feels overwhelming and weird at times and worse when forced. I am not in control of the way my body "over" reacts to stimulus. It is not conscious. It is not my fault. My body works differently and that's it. I still love touch, but it has to be on my terms.

Also, I don't have the same reactions as I did as a child. My senses are somewhat muted now. My husband is allowed and able to touch my face and head. But part of that could be because he has respected me and my body and that goes a long way.

October 28, 2013

Disability Fairs and Support

Two of my co-workers have Autistic sons and both of their sons are in my son's class. (On another interesting note, Hubby's co-worker's son is also in our class. Hmmmm. Makes you wonder about the IT sector a little!)

Anyway, I am open about my Autism and SPD with the female co-worker. We'll call her Nikki. Last week, our fine city's annual disability fair was held at a location right next to our office, so went together over our lunch break.


While we have slightly different approaches to parenting our sons, for the most part we agree on a lot of things. So it was fun to go up to different exhibitors together and run miles away from others. 


Everything was good and we were picking up pamphlets happily until we came upon the Autism Speaks table. We look at each other and say, "oh gods, no! Get away!" and scamper over to another table. But I stop her and say, "do you think I should go talk to them? Just ask them why they don't have any Autistics on their board?"

"No, Kelly! Don't do it! Don't get yourself all worked up! We don't have a lot of time!"


"but...but..."


"No..." and then she adds, "you know, I don't notice your Autism much, but at times like these, that's when it comes out!" and we laughed about it. Yes, I am stubborn and opinionated. 


But she has the tact and calmness to keep me calm and convince me now is not the time. I figure I might go back after work without her.


So we continue along, meeting companies. Then we see hyperbaric oxygen chamber therapy. I had warned her about it since they were there last year. You know, they have this study, which was made by their clinic, which showed no real significant long term improvement, but they continue to make money off parents grasping at straws for a treatment. Run, run, run! Ooouf, some sort of magnetic ionic something or other machine? What? Who? Woo?


And then there was the dolphin swim, which costs like, 5 million dollars. I have no doubt swimming with dolphins could be fun. It's something I always wanted to do as a kid. I had a "dolphin encounter experience" as an adult while on vacation in the Bahamas and yes, it was cool. But I've also since learned more about not using wild animals for our benefit and I don't think it's fair to keep them in captivity. I also don't think people should feel like they need to spend thousands of dollars on it. But hey, it's not my money.


On the plus side, I found some very cool OT swings I could outfit my home with and I also found an OT for myself! It's also really nice to go to an event like this with someone and run from the same exhibitors. 
On the way out, I thought to talk to Autism Speaks again and Nikki talked me down again. I did not go back after work. I wasn't in the mood to argue.

October 23, 2013

September 24, 2013

Adult ASD Test - The Results

Note: The other steps in my testing can be found here and here.

I FINALLY have my results in my hand!

First of all, I want to acknowledge there are lots of pros and cons to getting officially tested and there are a few other bloggers who have given very sage advice. I'll link to them here when I find them again.

For me, so far I see a HUGE benefit because I got more information than I was expecting. In addition to clarifying my ASD-status, I was diagnosed with Sensory Processing Disorder (SPD). This is great information. I've been recommended to see an OT to get some help for myself. I feel like I'm finally being heard, understood and better able to understand myself. It's amazing to realize all sort of things in  my life had a reason - that I'm not crazy! I can't really explain how freeing that is. It feels like I am just blossoming and with the right help, I can be even better than I was before.

Some people call their diagnosis date their New Birthday. I totally get that now.

I've spent the last few years getting the right help for my son. It's my turn now (he's doing really well!) and it's a really great feeling.

Happy New Birthday to ME! 

September 11, 2013

#WondrousWednesdays - Two Left Feet Momma

This week's interview is with Two Left Feet Momma! She is my sister-in-law, so she's talking about my niece. It's interesting how these sorts of things seem to run in families. I have never met my niece, since they live at the other end of the country, but I hope to one day and I'm sure the Little Man would have a lot of fun with his cousins.
***

We live in Langley, BC, Canada. Daughter is 5 years old, diagnosed with Sensory Processing Disorder and Anxiety (suspected high functioning Autism). I work full time as an Environmental Health Officer, currently on a Leave of Absence to support my daughter during her transition to school (kindergarten!). 

What is your biggest challenge with your family member’s disability? 

Being in a group setting is difficult, she becomes easily overwhelmed by sensory and social stimulation. Trying to make and keep friends as well as navigate the social complexities is challenging for my daughter. 

What is the greatest gift from your family member’s disability? 

Amazing memory! She can remember movies word for word as well as events in detail from years ago, and she is only 5. She is also becoming a pretty good little artist.

What’s one thing you want people to know about her disability that many don’t seem to understand? 

That it's not behavioural, she isn't "acting out." A firm discipline will not "fix" her. She is unique and requires a unique way of parenting. 

What has been the best part of maintaining a blog?

To me it's my safe place to talk. Where nobody is judging me about my family, my parenting, my decisions.

What is a typical day like in your life? 

Routine! We do similar things in a similar order. It keeps the chaos down

What’s your favorite pastime?

Drawing or hiking 


What’s your favorite food/drink? 

Greek food and wine
Anything else you’d like to share - a tip, words of wisdom, a recipe, a poem? 

Try and live life for today, try not to dwell on what might be tomorrow.

October 10, 2012

Does My Humming Disturb You?

One thing I noticed for the first time during our road trip to Toronto (probably because we hardly go anywhere with the child these days) is people staring/looking when he hums.

humming bird onequartermama autistic stimming humming
My son is like a beautiful little humming bird

He hums, in my opinion, because he's happy and it's stimming and calming. I have no problem with his humming. I actually kinda like it. It is rather loud and it's not a tune, it's more like a long monotone hum. Kind of like an AUM (sometimes I tune him to aum and we harmonize together, but he usually does his own thing).





Anyway, so people stare when he does this. Hubby reasons they may find it annoying because it's not a normal sound to come out of most people (I guess humming songs is socially acceptable, but humming one tone is not?) or they stare wondering why we don't tell him to shut up. I don't know, maybe I should ask someone next time they stare. Because again, it doesn't bother me and I see no reason to offer an explanation. What do I need to explain? He's humming, he's happy, what's the problem? He's not picking his nose and sticking it in your ear. And frankly, we're not in a library, we're in a loud food court (another reason he might be humming in the first place, to counteract that stimulus) and he's not the loudest noise in here.

Or maybe they just can't stop looking at his mesmerizing green eyes and that's why they're looking at us? I have the same problem :)

April 20, 2012

Lending a Stimming Hand


We've figured out that when the Little Man starts stimming, we can quickly calm it by rubbing his face and head vigorously. I guess because of his hypo-sensory issues, he doesn't feel it and needs a reminder now and then? Anyway, doing that a couple of times a day at the first signs eliminates the whole running around and bashing his head into furniture bit. Also eliminates the need for a crash helmet and floor to ceiling padding.

Anyway, the other day, Hubby was sitting on the couch and tapping his foot. Little Man went up to him and patted him on the head. LOL. I guess he thought Hubby was stimming (maybe he was!).