So, over the years, my attitude towards awareness has changed and evolved.
When we began our journey, I felt that we needed awareness, for the sake of my son, so that people might think before judging him, or me, based on his challenging behaviour.
Then I went through a phase where I was so hopping mad that I felt that every time I heard calls for "awareness" I felt that what people were asking for was acceptance. Acceptance though can go two ways. Acceptance of the person, absolutely. Acceptance of the reality that autism is somehow normal, never. Acceptance of the ridiculous discrimination, challenges, denials of sickness, absolutely never.
I feel like I'm starting to come to a balanced opinion. I can finally see past the blue puzzle pieces that stand for fundraising and money going to pay for celebrity campaigns whilst offering no help to families.
Our cause needs awareness. It needs for people to recognize how many affected children there are out there. Awareness for the shear numbers. Awareness of how those families are struggling. Awareness that comes with awakening. People need to bloody well WAKE UP!!! If not out of compassion, then out of financial concern. The country cannot afford for so many children to need such expensive interventions. Schools are at breaking point. Parents are at breaking point.
Our schools need awareness. Our children are everywhere. Teachers need the tools to be able to educate these kids in spite of their challenges, because they aren't going away.
The medical profession most of all needs awareness. They need to recognize that there are indeed things THEY can do to help these children, without resorting at the first appointment to a prescription for risperdal.
Our government needs awareness. They need to be asking questions as to why the numbers keep climbing with NO answers. What causes autism? How many children recover? How many children are truly affected. Why do the cases present so differently? How do we get answers? Why the proverbial dead horse of genetics and eye gazing keeps being flogged?
It's time to get serious. It's time to really look at these kids from a true biological perspective. There was a study not too long ago that found that some children with autism could be grouped into subsets. Are we really dealing with autism or autisms? If that's the case, we need to be figuring out which autism children have - could it open a door for treatment and recovery, even for a small percentage of children?
Why do these children have immune problems? Why do they have food allergies? What is going on from a GI perspective?
Let's make this upcoming Awareness Month both Awareness and Action Month.
It's time for answers.
Tuesday, March 31, 2015
Monday, March 16, 2015
Routine..
When a child is diagnosed with autism, or a spectrum disorder, one of the first things you are likely to hear as a parent is "Children with autism need routine".
Parents are encouraged to keep their lives as predictable as possible, to avoid meltdowns and problems processing the change in schedule. We are encouraged to have visual charts to show our children what is happening each day, each week.
Here is my experience with this, and please note, this is not for all children. Some truly do need routine to be able to function. Some kids just have too much going on to even begin to cope with another piece of their world falling apart. But, please, do not buy the line that "all children with autism NEED routine". Some of them can be taught to cope, to adapt, to roll with it.
When our son was diagnosed at 2, we were also fed this line. I considered our life - that of a military family - as well as both mine and my husband's personalities. It wasn't an option for us. Military families move on average every 2-3 years, and indeed just a month after our son was diagnosed, we were due to move again, for just 11 months, after which we would be moving somewhere else. New schools would be the norm for him, including new teachers, therapists, friends, houses, climates, states and doctors. I am a pretty poor planner and a terrible procrastinator, which tends to mean that things get done when they get done, often at short notice, or at the last minute.
So, considering all these factors, I proposed to do exactly the opposite. I would sabotage our 'plans' as often as I could, without causing havoc. I would tell my son we were doing something, then throw in an errand, or say "change of plans", or just 'forget'. Sometimes he remembered when I did this, often in fact. We would just make 'firm' plans to make it up, especially if it was something fun. We would talk about how sometimes things just didn't go to plan.
Sometimes he got upset, although this decreased quickly. After about 18 months, he would get in the car and ask "where are we going today?". I considered this a victory.
Don't get me wrong, I'm not advocating for people to become parenting flakes with their children, but, children (and some adults) need that horrible, valuable life lesson that sometimes plans don't work out. Sometimes people don't show up for parties or playdates. Sometimes things get cancelled. Sometimes you want to cancel. And that is ok. As my son says "It's not the end of the world, mum". Life doesn't fall apart because you said you would take your child swimming at a particular time on a particular day, and well, you just didn't get to it. By insisting that routine is the only way to live gives you an exhausting, unattainable standard to live by.
ABA therapists talk about 'generalization' a lot - that is, the transfer of skills across people and situations and this is a perfect example. If your child has issues when they get a new teacher or a new therapist, what do you do? You cannot insist on 'sameness' so that your child doesn't have a bump in the road. You work through it. Our old therapy office had a great system. The kids would rotate through tutors in timed blocks, so, they were exposed to all the tutors at the center, which was good for the kids and also great for the tutors, since all kids with ASD are so different. Of course, some children might need a little more hand holding through the process than others and some might need to work it slower, especially if they are used to a very consistent routine. But, the reward of having a child that can fly by the seat of his pants and have a little more spontaneity is just amazing.
Give it a try.... :)
Parents are encouraged to keep their lives as predictable as possible, to avoid meltdowns and problems processing the change in schedule. We are encouraged to have visual charts to show our children what is happening each day, each week.
Here is my experience with this, and please note, this is not for all children. Some truly do need routine to be able to function. Some kids just have too much going on to even begin to cope with another piece of their world falling apart. But, please, do not buy the line that "all children with autism NEED routine". Some of them can be taught to cope, to adapt, to roll with it.
When our son was diagnosed at 2, we were also fed this line. I considered our life - that of a military family - as well as both mine and my husband's personalities. It wasn't an option for us. Military families move on average every 2-3 years, and indeed just a month after our son was diagnosed, we were due to move again, for just 11 months, after which we would be moving somewhere else. New schools would be the norm for him, including new teachers, therapists, friends, houses, climates, states and doctors. I am a pretty poor planner and a terrible procrastinator, which tends to mean that things get done when they get done, often at short notice, or at the last minute.
So, considering all these factors, I proposed to do exactly the opposite. I would sabotage our 'plans' as often as I could, without causing havoc. I would tell my son we were doing something, then throw in an errand, or say "change of plans", or just 'forget'. Sometimes he remembered when I did this, often in fact. We would just make 'firm' plans to make it up, especially if it was something fun. We would talk about how sometimes things just didn't go to plan.
Sometimes he got upset, although this decreased quickly. After about 18 months, he would get in the car and ask "where are we going today?". I considered this a victory.
Don't get me wrong, I'm not advocating for people to become parenting flakes with their children, but, children (and some adults) need that horrible, valuable life lesson that sometimes plans don't work out. Sometimes people don't show up for parties or playdates. Sometimes things get cancelled. Sometimes you want to cancel. And that is ok. As my son says "It's not the end of the world, mum". Life doesn't fall apart because you said you would take your child swimming at a particular time on a particular day, and well, you just didn't get to it. By insisting that routine is the only way to live gives you an exhausting, unattainable standard to live by.
ABA therapists talk about 'generalization' a lot - that is, the transfer of skills across people and situations and this is a perfect example. If your child has issues when they get a new teacher or a new therapist, what do you do? You cannot insist on 'sameness' so that your child doesn't have a bump in the road. You work through it. Our old therapy office had a great system. The kids would rotate through tutors in timed blocks, so, they were exposed to all the tutors at the center, which was good for the kids and also great for the tutors, since all kids with ASD are so different. Of course, some children might need a little more hand holding through the process than others and some might need to work it slower, especially if they are used to a very consistent routine. But, the reward of having a child that can fly by the seat of his pants and have a little more spontaneity is just amazing.
Give it a try.... :)
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