Posts Tagged comfort
Written on September 13, 2011 by Stuart Duncan 
Filed Under: Autism
There’s a lot of talk around the Autism community lately over emotions.. such as whether or not there should be a grieving period.. or whether or not we should be feeling any guilt.
“Should be”…. such a funny concept in a world of differences.
In my experience
I can only tell you about how it went for me… what I felt and didn’t feel. Because the truth is that everyone is different.
I have a pretty typical story in that I had heard of Autism but didn’t know much beyond that until I started to look for answers as to why my son acted the way he did. A lot of repetition, lining things up, aversion to a lot of foods and so on and so forth, had me reading website after website to see what it might be.
I recognized these signs rather early on and was quick to research all that I could… and despite a lot of conflicting stories, I can honestly say that I never once felt guilty about it. I never once thought that there was something that my wife or I did wrong or that there was something that may have caused my son’s Autism.
It wasn’t a foreign concept to me though, as family member after family member and friend after friend asked if we knew what had caused it, or if we were afraid that we had done something to cause it.
As for grieving… I think it’s funny how people have different interpretations as to what grieving is. Most people think that it means breaking down into a crying fit and feeling complete remorse and being depressed for a while, etc, etc.
For me, I think of grieving as simply being worried about the future, about missing the things that you can’t do with your child, or things you won’t be able to do… thinking about potential bullies, potential other issues that may come around (seizures, allergies, diets, etc).
No, I’ve never broken down crying and no, I have no problem what so ever with who my child is or who he will become.. but a small part of me does grieve from time to time. I still want more for him… more that Autism will make very improbable (not impossible).
“Should Be” does not mean right or wrong
What I try to tell people is that there is no right or wrong way to feel. Granted, I do feel that feeling guilty serves no purpose and benefits no one… but it’s not wrong to feel guilty. If anything, the only thing I could imagine as being wrong is if you felt nothing.. if there was no mixed bag of emotions. Because hearing that your child has Autism is a bit of a big deal. It can change the course of the rest of your life.
There is just so much emotional baggage that comes along with an Autism diagnosis that we can’t possibly all feel the exact same things at the exact same time. Some of us might not feel guilty, some of us might not grieve. Some of us, sadly, won’t ever be able to accept it.
It’s not right or wrong, it’s just different.
Fear of the unknown
For most of us, Autism is a very big unknown that can take all those plans for the future that you had and make your future into an unknown as well.
Unknowns are scary. We fear them. We try to justify them, give meaning to them, master them… we try to find the cause of it.
Eventually, hopefully.. we come to accept them. Not just Autism, but unknowns in general. There are just some things we can’t control, that throw our lives off course and we can either feel guilty about it, grieve over it or… accept it.
If you read posts by people that are grieving, don’t judge them because you didn’t grieve. If you read posts by people that feel guilty, as if they are certain that they did something wrong. Reassure them but don’t judge them. They don’t really need to feel like they’re doing something wrong by feeling like they’re doing something wrong.. ya know?
Everyone is different and as much as we’d like for everyone to hate the people we hate, to fear what we fear, to accept what we accept and so on and so on.. it’s just not going to happen.
We all deal with life differently. It may seem that some people deal better than others, but the truth is that we just deal with it differently.
Written on September 9, 2011 by Stuart Duncan
Filed Under: Autism
This year, my younger son Tyler (3yrs old) started JK… his first time in school. He’s so very excited for it because he’s watched his older brother, Cameron (6yrs old), go off to school for 2 years now.
And even though Tyler is still only 3, he’s more than ready. He can count pretty high, knows his alphabet, goes to the bathroom on his own and most of all… he’s just so crafty. He loves to paint and build things… school is so perfect for him.
Still though, even when it goes perfectly for the most willing of children, school can be overwhelming for the first little while.
Still bragging about this school
Cameron - Big Brother
I’ve written many many times about how I picked up my family and moved over 850km away to get Cameron into this school because of their amazing Autism classes… this year, Cameron is back for his 3rd year (grade 1 this year!) and he gets the same teacher, the same teachers assistants and some of the same classmates.
A couple of children have gone off to IBI or to another classroom but his familiar friends are still there. Cameron is doing exceptionally well thanks to this.
There is another added benefit though, which I have not discussed, because we had not yet reached that point but this year is the year… his little brother gets to attend the same school!
It’s a normal, run of the mill public school but they have 4 special classrooms especially designed and equipped for children with Autism.
This means that while Cameron is in his class of 4 children (including him), with 1 teacher and 2 aides…. Tyler, his little brother, is across the hall!
Overcome Autism? No problem with the right motivation
Cameron has never had a huge problem with hugs or showing his feelings but then again, it’s not as natural for him as it would be for most other children either though.
Trying to get that out of him where he’s not quite as comfortable is even tougher… like say, at school.
But that doesn’t stop him when Tyler needs him!! Oh no.
Tyler knows that his big brother is across the hall and when the anxiety gets too much for him, he knows to ask his teacher… so his teacher takes his hand, walks him across the hall, Cameron stops what he is doing, gives his little brother a big hug and tells him that he’s ok… and Tyler goes right back to his class, feeling so much better.
This is huge!
Cameron told me that he remembers when he first went to school… for the first 6 months or so, he had a very hard time because he “didn’t feel safe.” I told him that sometimes, Tyler might feel that way too but mom and dad can’t be there to help him.
Cameron stepped up to the task in a huge way and is genuinely eager, excited and willing to help out his little brother. He wants be the big brother that Tyler needs.
Not a surprise to those that know him
Tyler - Ready for his first day!
While I am excited about this, I’m not surprised.. and I’m sure those that know Cameron won’t be surprised by this either.
Still though, as a parent, I’m still so very proud. Also, if you’re a parent of a child with Autism, I’m sure you can understand that even though I’m not surprised, I’m still… well, I wasn’t going to believe it until I saw it.
Cameron amazes me every day, as does his little brother, but I still put no expectations on him before hand. He won’t disappoint me if he doesn’t do it, he won’t surprise me if he does do it… but it’s never necessary because sometimes, he just doesn’t do what some might expect of him.
And while it doesn’t surprise me, what does get me is that he’s so willing to stop what he’s doing… to break routine… to show affection right there in front of everyone… and to know and understand what his little brother is feeling.
In that moment, when his brother needs him most.. he is not autistic. There is no Autism. There are no teachers. There are no parents.
There is only Tyler. His little brother. And he loves him.
Written on January 21, 2011 by James
Filed Under: Autism
My youngest who is aged 7 with autism hates the thought of socialising at birthday parties and other similar events. Just the mention a friend’s birthday party invitation brings the little mite out in beads of sweat, making sure we understand that he’s not going to the party under any circumstances “send them a text now and tell them I’m not going, do it, do it now before it’s too late” is what we’ll get.
Before he was diagnosed with autism we just put it down to extreme shyness and nervousness, the hubbub of screaming kids, balloons popping and the happy birthday song were all too much, and the few parties we did attend saw us leaving early, and I mean early, usually before everyone had arrived. As it happens most people understand why he doesn’t enjoy the situation and usually left with a party bag and a balloon.
The only party that I’ve seen him enjoy was a soft-play activity area, he was agitated before we arrived but once we were there settled down, maybe it was because he could crawl into a ball pit and get away from the other kids? It’s difficult to say but we were relieved that he got some enjoyment out of it.
A family get together is a completely different affair. Not so long ago he would spend the entire occasion watching TV in his bedroom and having food hand delivered on demand until it was time for bed. Now it’s a complete change around, and almost looks forward to the occasion as long as it’s been organised by one and only, going through the fine detail of the arrangements over and over again with military precision. Every detail has to be spot-on and no surprises, surprises are not welcome and don’t go down too well with most autistic children.
We’ve just come to a conclusion that children’s birthday parties are not his scene and he doesn’t feel left out or sad, in fact it’s a huge relief and does not miss them at all.
Written on August 13, 2010 by Stuart Duncan
Filed Under: Autism
Even if you had never heard of such a thing before, I’m sure you can identify with what it is. A comfortable rut is a period of your life where things are just easier to keep doing them as you did the day before, rather than make a disturbance that would be deemed uncomfortable even if it means moving forward.
The most popular of these would be diets, or lack of exercise… or both. Basically you get into the habit of eating the foods you like, you can’t find the time to exercise and eventually it’s just easier to just gain weight even though you don’t want to.
In the case of parenting a child with Autism, it’s a very very easy rut to settle into.
What happens is that you try various diets, various programs, therapies, routines and everything else until eventually something seems to work… something starts to show results and in a little while, it becomes comfortable.
And a few months later you start to realize that your child has been eating the same 4 things every day because it’s just easier than fighting or dealing with the issues that come from not eating. You just start getting used to sleeping at certain times and not sleeping at others. You start dressing your child in the same 3 or 4 outfits (if you’re lucky) because it’s less of a fight to put it on them.
A comfortable rut is exactly what your child with Autism is looking for. We can’t confuse this with a routine. A comfortable rut is what your Autistic child wants, a routine is what they need.
What is the difference between a routine and a comfortable rut?
Well, a comfortable rut sees no progress. There’s no moving forward. For example, instead of trying new foods or dietary supplements or pushing your child to break boundaries, you just keep feeding them the same old thing.
A routine involves doing the same things at the same time but can still be a push forward. For example, when eating with Cameron, we eat at the same time, and he generally eats the same meals but, each day we get him to try something new. Even if it’s just a bite or just a nibble, he tries it. Some things he’s liked, such as combining his cheese and gluten free crackers. Others, like fish… he did not like.
That’s progress while still being in the same routine.
Cameron would prefer to wear the same two Super Mario shirts every day for ever if we let him, which would make for a comfortable rut indeed. Instead, we dress him similar yet different shirts… nothing that will irritate his sensory sensitive skin too much but something that will be less than the most comfortable thing he could wear.
You’ve all heard the motivation speeches, the leaders talk and the get rich guys go on and on… push your personal boundaries if you wish to become more than you are! Well, why wouldn’t it be the same with your kids, especially if Autistic?
If you want your child to get out into the world and be independent, whether your child is very severe on the spectrum or very high, you must push their boundaries if they won’t do it for themselves.
I know, it’s really easier said than done in most cases but I never said it would be easy.
I’m not going to get into the specifics of it or anything because your doctors/therapists will likely be able to help you more than I could if they’ve worked with you before. Moving forward doesn’t mean you stop what you’re doing now, it doesn’t mean breaking from routine… it just means getting out of that comfortable rut and doing it!
Written on May 13, 2010 by Stuart Duncan
Filed Under: Diagnosing Autism
One of my earliest memories of Cameron, apart from his birth, is how he always had to be playing with my ear lobes, or my wife’s. In fact, he would get down right mad if we didn’t let him or he wasn’t able. It was such a big part of his life that he would do it in his sleep. If he fell asleep on me on the couch, or slept in our bed, his hand would wander until it found my ear even though he was fully asleep.
All children find something to do that soothes them, whether it’s sucking a thumb, holding a favourite blanket or stuffed animal… we just assumed that this was his way of soothing or comforting himself. As he got older, it became more of an issue for us as he needed it more and more, even if it meant us having to be bent over uncomfortably just so that he wouldn’t be furious.
It wasn’t until years later, after his diagnosis that we discovered that it was so much more than that. When Cameron first went to school, we came to realize that his biggest fear, his biggest issue is feeling unsafe. Not just unsafe, but that those around him are not keeping him safe.
You could argue that ‘soothing’ is a form of helping yourself feel ‘safe’ but I think it’s more than that. Cameron would not do the ear thing with just anyone, it wasn’t just a motion that helped him feel better.
He tugged on our ears because it kept us close, it kept us in contact and it made him feel safe.
More so than even that, because he was unable to speak and is still very much unable to express his stronger emotions, it was his way of saying he loves us and he needs us.
I think many people dismiss Autistics as being unable to handle and express emotions but the truth is, if we look hard enough, if we don’t look passed the little things… they are telling us, in their own way.
Cameron was telling us a lot with his cute little self soothing technique, I just didn’t know how much.
I can only tell you about how it went for me… what I felt and didn’t feel. Because the truth is that everyone is different.
