I scheduled an appt for my son today for allergy tests. I have read more info in the last two weeks then I have in the last few years. I have also paid close attention to what other autistic children are going through physically.
Here is the thing, When Phillip was diagnosed with autism, like a lot of kids, it was early intervention time. Never did I hear from anyone, lets rule out health concerns first, then decide what to do. No, I am not saying you can address autism with a simple blood test, but I am learning some physical symptoms are not always associated with autism alone. In fact it may just be some autistic traits are a physical side effect of something we have missed by focusing on autism alone.
We may have blood tests done and be told, nope..not one allergy and that's fine, but if I don't do it and I have missed something then even early intervention therapies would be a waste of time.
My son is skinny, very light weight for his age but he wasn't always so little. I look back at his pictures and I see a chubby little guy. When I talk to the doctor about his weight we have always had the same conversation. He is a picky eater, I can't give him vitamins because it messes with his system and it risks weight loss. The one comment that has always grabbed my attention is..well, you are skinny to.
Yes, I am skinny to but does that mean he is just built that way? Maybe or maybe not, but just simply looking at me doesn't rule out a possibility his body isn't processing, and I don't mean just his mind. Picture a large women bringing her child in for a check up. The child weighs in off the charts, would a doctor address it or would they look at mom and say...well, your overweight to. For some reason I just don't think that would go over well.
So my new approach to my son and the medical community is one thing at a time physically. Rule out or in anything that may be disrupting the way his body can process, because he can't tell us if that's the case. Maybe, just maybe his body is trying to tell us something and everyone is so hell bent on getting him to meet social expectations, the physical expectations aren't being met.
Constipation seems to be a major problem for kids with autism, and for our son it certainly is. Is that really an autistic problem? Could be but what if it's not. Autism is a neurological difference, right along with many other things people face.
I have ADD and I will apologize now if you are eating your lunch but the best way to get the point across is to ask, if someone who has ADD has unorganized bowel movements. You see to assume constipation is because of autism, is a little silly to me. I do know when the constipation begins...the autism intensifies. His mind reacting to what is stressing his body, and I am convinced in this day and age we are putting our bodies through an enormous amount of stress.
Remember the old saying our moms and dads used to say.."your like a human garbage disposal" In our society now, the answer to that would be.."no, I am more like a chemical dumping ground" We can't assume all the toxins we consume won't effect our bodies physically. After all, it's proven to in labs everywhere.
Like many people with autism, your body can't directly communicate with you...or can it?
Friday, July 13, 2012
Thursday, July 12, 2012
What Would You do...
Wednesday, July 11, 2012
Move Slowly And Wait For Society To Catch Up..
What would a perfect world be like for families dealing with autism or any different ability? Here is what I would have liked to see when the autism came our way.
I would have liked to open my phone book and looked up autism, to find options. People trained specifically in what we need, who will say to me..."first I am going to spend time with your child like a family member or caregiver would do. I am going to spend time getting to know him, playing with him, interacting with him as you would. I will do that until I am comfortable implementing a strategy to feed his gifts. I will not get out a jug of bubbles and see how angry he gets when I stop blowing them because you already told me he gets frustrated when he can't communicate. I will trust you as his parent when you explain to me what his autism brings to the table, because you are the expert until I understand him nearly as well as you do. I am the only person he will be seeing because I understand the more faces and places he is thrown into, will overwhelm him." Then I would also like to flip through my phone book for schools and find programs built just for kids with sensory differences. Without having to settle for whatever is available and hope they might know what they are doing. An education system built for the needs of each child and based on understanding.
I would like to hear someone say to me...I am tossing out the guidelines for autism because I have never met an autistic child that fits directly into them. I am not setting out to fix your child or force him into the social norm, because I have never met a child or adult who is socially perfect. Some of the greatest contributions to our world were made by people who didn't fall in line and people didn't always understand them, so it is perfectly OK for your child to be different. We aren't going to talk about the cause of autism because at this point it's here and it's not a disease. The emotions you will feel towards autism are largely due to society and lack of knowledge, not the difference in your child. I will not allow you to blame every little thing on autism, because a child is a child and we are going to remember that every day.
Yes, this would be a perfect world for many people and would help parents to feel strong and confident in the diagnosis, which is also a word I have grown to dislike because it puts the difference in a disease category from the start.
Wouldn't it be nice if a parent who has just been told autism is going to be a part of life, could feel confident and secure in whatever they decide to do from that point on. If I ruled the world or if our son ruled the world, this is what would evolve for all of the families effected by autism. For now we move forward very slowly, taking time to stop and breath. Maybe then society will have plenty of time to catch up.
I would have liked to open my phone book and looked up autism, to find options. People trained specifically in what we need, who will say to me..."first I am going to spend time with your child like a family member or caregiver would do. I am going to spend time getting to know him, playing with him, interacting with him as you would. I will do that until I am comfortable implementing a strategy to feed his gifts. I will not get out a jug of bubbles and see how angry he gets when I stop blowing them because you already told me he gets frustrated when he can't communicate. I will trust you as his parent when you explain to me what his autism brings to the table, because you are the expert until I understand him nearly as well as you do. I am the only person he will be seeing because I understand the more faces and places he is thrown into, will overwhelm him." Then I would also like to flip through my phone book for schools and find programs built just for kids with sensory differences. Without having to settle for whatever is available and hope they might know what they are doing. An education system built for the needs of each child and based on understanding.
I would like to hear someone say to me...I am tossing out the guidelines for autism because I have never met an autistic child that fits directly into them. I am not setting out to fix your child or force him into the social norm, because I have never met a child or adult who is socially perfect. Some of the greatest contributions to our world were made by people who didn't fall in line and people didn't always understand them, so it is perfectly OK for your child to be different. We aren't going to talk about the cause of autism because at this point it's here and it's not a disease. The emotions you will feel towards autism are largely due to society and lack of knowledge, not the difference in your child. I will not allow you to blame every little thing on autism, because a child is a child and we are going to remember that every day.
Yes, this would be a perfect world for many people and would help parents to feel strong and confident in the diagnosis, which is also a word I have grown to dislike because it puts the difference in a disease category from the start.
Wouldn't it be nice if a parent who has just been told autism is going to be a part of life, could feel confident and secure in whatever they decide to do from that point on. If I ruled the world or if our son ruled the world, this is what would evolve for all of the families effected by autism. For now we move forward very slowly, taking time to stop and breath. Maybe then society will have plenty of time to catch up.
Tuesday, July 10, 2012
Slow Way Down And Put Your Running Shoes On!
I have a few reasons I started this blog, the first one being so people can understand how autism effects us. Even then you would still only be learning one experience and they are all different, but I am very grateful to be able to share how autism effects our lives.Another reason is when I started looking for support that was positive and without comparison, it was harder to find then I thought it would be. I am still a part of support groups and read what people are going through all the time because I want to learn about there experience to.
When someone says, kids with autism don't understand danger, I don't agree with that. Our son is brave that is for sure but he is also very careful and rarely gets hurt because he seems to inspect danger ahead of time when it comes to simple things. I used to think he was not aware of big dangers such as cars in parking lots, but when I started to really think about how he processes the world I began to slow way down. I had to stop being in such a hurry all the time because I wasn't giving him time to take it all in the way he needed to. No, I don't always have time for this but when I do, it clearly makes a difference for him.
As an adult who can barely focus for more than a half hour at a time I am blown away by my sons focus. Lets say we are outside by a street and there are cars. He is playing and he knows there are cars but across the street a leaf is blowing in the wind. He starts to go towards it and it seems he has no understanding of the danger. Well, I don't think it's a lack of understanding I think it's the focus on the leaf. It's to powerful of an interest and he is focused on the leaf and the movement, the busy street just became a thing of the past.
Toddlers are that way in general but you throw a twist of autism in with that and you have to put your running shoes on. As a parent you have stopped your child from being hit by a car, but the autism is still focused on the leaf and now you might have a meltdown on your hands because you just put a brick wall in front of the focus and it hasn't processed.
If you read symptoms for autism you might find yourself picturing a zombie of a child that won't look at you, won't speak, never listens, shows no emotion, and when they are not beating there head off a wall they must be running in front of cars with a lost look on there face.This is not what autism is like for us, and that list of symptoms can create some negative images for people who aren't effected.I started to hate the symptoms of autism because no child falls into all of the symptoms. That's what is tricky about autism, it's not so clearly defined. I tend to think the only way autism will ever be completely understood is by getting to know 1 in every 88 children on a personal level. For now, keep your mind open and spend a day looking for the things that could completely distract you if you had no control over what your mind wanted to absorb. At the end of they day you might just realize how many really awesome things you don't process while your rushing through life. If you are caring for an autistic child...slow way down and put your running shoes on.
When someone says, kids with autism don't understand danger, I don't agree with that. Our son is brave that is for sure but he is also very careful and rarely gets hurt because he seems to inspect danger ahead of time when it comes to simple things. I used to think he was not aware of big dangers such as cars in parking lots, but when I started to really think about how he processes the world I began to slow way down. I had to stop being in such a hurry all the time because I wasn't giving him time to take it all in the way he needed to. No, I don't always have time for this but when I do, it clearly makes a difference for him.
As an adult who can barely focus for more than a half hour at a time I am blown away by my sons focus. Lets say we are outside by a street and there are cars. He is playing and he knows there are cars but across the street a leaf is blowing in the wind. He starts to go towards it and it seems he has no understanding of the danger. Well, I don't think it's a lack of understanding I think it's the focus on the leaf. It's to powerful of an interest and he is focused on the leaf and the movement, the busy street just became a thing of the past.
Toddlers are that way in general but you throw a twist of autism in with that and you have to put your running shoes on. As a parent you have stopped your child from being hit by a car, but the autism is still focused on the leaf and now you might have a meltdown on your hands because you just put a brick wall in front of the focus and it hasn't processed.
If you read symptoms for autism you might find yourself picturing a zombie of a child that won't look at you, won't speak, never listens, shows no emotion, and when they are not beating there head off a wall they must be running in front of cars with a lost look on there face.This is not what autism is like for us, and that list of symptoms can create some negative images for people who aren't effected.I started to hate the symptoms of autism because no child falls into all of the symptoms. That's what is tricky about autism, it's not so clearly defined. I tend to think the only way autism will ever be completely understood is by getting to know 1 in every 88 children on a personal level. For now, keep your mind open and spend a day looking for the things that could completely distract you if you had no control over what your mind wanted to absorb. At the end of they day you might just realize how many really awesome things you don't process while your rushing through life. If you are caring for an autistic child...slow way down and put your running shoes on.
Sunday, July 8, 2012
Saturday, July 7, 2012
Flowing With Ability, Not disability
I have found with my sons autism and this could be
the case for anyone who has a difference, pity is a common problem I don't care for. I
don't want pity for my son, or pity as his parent. I have also found many
people seek pity, they complain to no end, blame the difference for certain
behaviors. Yes, some behaviors I have no control over and neither does my son,
but at the same time when his difference is clear, I don't want anyone to feel sorry for either one of us. I certainly don't feel sorry for myself and I refuse to allow my son to feel
sorry for himself as he tackles life.
I have also found along this journey many people
complain about what could be considered just the ups and downs of parenting in
general, but they become engulfed in autism and at times it becomes hard to know what's autism and what is just a child just being a child. For example, eating dirt. My son had a taste for dirt and that may have been sensory related but he was a toddler at the time and well let's face it, kids eat dirt from time to time. Unless he is turning his cheek to waffles and snacking in the yard at ten years old, I am not going to worry to much just yet. There is a balance somewhere in there and often, it is very hard to see clearly.
When I talk about my son’s difference I focus on
the strengths. Yes, I talk about the challenges so the people around us have
some kind of an understanding of why we get certain reactions to things. I want the people in my son’s life to understand
that he is flowing with ability, even with a diagnosis that is a disability. Do
I avoid some situations that may cause a negative reaction? Yes I do if I can,
but I also tend to want him to surprise us and sometimes he does exactly that. The important element is being given a chance to surprise us and the chance to be around people who know he is capable.
So from time to time, and more often than not, If I am flying through a grocery store and trying to avoid my sons flying limbs...you might see while I'm dodging those flying limbs I can still smile back at you. Maybe it's a challenging moment of the day but it's just a moment and when that moment is over, we still have our smiles. Those smiles are real, because like our autistic son I don't see the logic in faking a smile. Enjoy the moments good or bad because they never last and then....a new one begins.
Thursday, July 5, 2012
Love The Surprises I Didn't See Coming.....
If there one thing I have learned among hundreds of things with my sons autism, it's that he always surprises me by reacting to things in a way I didn't see coming.
I was worried about the 4th of July, the faces, the chaos that comes with holidays, and most of all wondered if he would be afraid of the fireworks. This year we spent the holiday with some of my family at a condo. With plans to head out on a boat to watch a huge fireworks display over the lake. Why was I worried? well, a life jacket was a new thing for him, a boat was fairly new, and he has always slept through fireworks. So I had tons of questions going through my mind. Would be put on a life jacket and be OK with it? Would he be OK with being on a boat? Would be be able to process the fireworks without being afraid of the sound?
All these questions running through my mind and really no way to know, until we do it. If it all goes wrong, well we push on and get our answers, but there is always that part of me praying he will surprise us. This year....was full of surprises! He took to his cousins like he lived with them on a daily basis. He grew excited when we put the life jacket on him. He loved being on the boat, now he didn't leave my lap and barely moved, but when he was on my lap he was totally relaxed. To the point he fell asleep sitting up and just feeling that ease in him was the best feeling in the world.
When it came time to get back on the boat and head across the lake to watch the big fireworks, I was still wondering how he would react. He loved watching them and was totally calm, even with the sounds and boom that rattled the boat. Sat back totally relaxed and let one little tiny.."yeah!" No, he didn't eat much and no, he didn't stay still much but with our son, just to feel him at ease and relaxed really was just the best feeling. Many kids get extremely excited when they like something and you have to remind them to calm down, but when Phillip finds something he loves he calms right down and takes it all in, every second of it.
On that note, I am grateful for the times I am totally surprised. The times all my worries and constant wondering is answered in a way I didn't see coming. It's interesting how something that requires life on repeat can also find so much peace in something out of the ordinary.
I was worried about the 4th of July, the faces, the chaos that comes with holidays, and most of all wondered if he would be afraid of the fireworks. This year we spent the holiday with some of my family at a condo. With plans to head out on a boat to watch a huge fireworks display over the lake. Why was I worried? well, a life jacket was a new thing for him, a boat was fairly new, and he has always slept through fireworks. So I had tons of questions going through my mind. Would be put on a life jacket and be OK with it? Would he be OK with being on a boat? Would be be able to process the fireworks without being afraid of the sound?
All these questions running through my mind and really no way to know, until we do it. If it all goes wrong, well we push on and get our answers, but there is always that part of me praying he will surprise us. This year....was full of surprises! He took to his cousins like he lived with them on a daily basis. He grew excited when we put the life jacket on him. He loved being on the boat, now he didn't leave my lap and barely moved, but when he was on my lap he was totally relaxed. To the point he fell asleep sitting up and just feeling that ease in him was the best feeling in the world.
When it came time to get back on the boat and head across the lake to watch the big fireworks, I was still wondering how he would react. He loved watching them and was totally calm, even with the sounds and boom that rattled the boat. Sat back totally relaxed and let one little tiny.."yeah!" No, he didn't eat much and no, he didn't stay still much but with our son, just to feel him at ease and relaxed really was just the best feeling. Many kids get extremely excited when they like something and you have to remind them to calm down, but when Phillip finds something he loves he calms right down and takes it all in, every second of it.
On that note, I am grateful for the times I am totally surprised. The times all my worries and constant wondering is answered in a way I didn't see coming. It's interesting how something that requires life on repeat can also find so much peace in something out of the ordinary.
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