Today I am a guest blogger over at "I'm Just That Way and That's Just Me", a wonderful blog edited by another special needs parent, Dani G. She is the mother of a sweet little girl who, like my son, has autism...
Even though I will remember 2010 for progress that Diego has made, I will also remember some scary moments, hospital visits and ear infections. In order to move forward and focus on helping him, I wanted to take the time to reflect on some of the concerns and tough moments of this past year. We know 2011 will be bigger and better! Please click here to read my post...
Tuesday, January 25, 2011
Monday, December 20, 2010
Emotional reactions to autism
I have always held on to the belief that you can tell a lot about a person by how they respond to adversity. I used to be able to say that I work well under pressure and was able to remain calm when presented with different challenges throughout my life. That was in the past though, before I was met with a far greater challenge and all of that toughness started to go out the window when confronted with autism. Now if you see me, you may notice I tend to walk with my head down or seem to have a distant look in my eyes. These are both sure indications that my thoughts are elsewhere. I often have trouble focusing on something when I know my son is sick or having a hard time adjusting to a change in his schedule.
When I watched my older son struggle through his acid reflux problems and crying fits as a baby, a part of me was affected in a way I didn’t know possible. He just couldn’t get comfortable. That was only the beginning. Then as he grew older we noticed his lack of speech along with the extreme sensory issues. All of this was accompanied by tantrums. I don’t know of a single day the past four and a half years where there wasn’t something to worry over or obsess about. From the illnesses, doctor appointments and evaluations to crying fits, tantrums and frustration for all involved, I now have a hard time imagining a time or a place where autism was not in my life or a part of my everyday thinking.
I’ve discussed this before and I will reiterate the same idea again, what happens when you become so involved with autism and helping your child that you have a hard time connecting with others that are not affected? Is that something that other parents of children on the spectrum are concerned with? Does that make me a bad son, brother or husband if I fail to connect with family because I am too focused on special needs?
As a special needs parent I know there are people out there who think less of my son and feel the need to remind others that they do not approve of certain behaviors associated with autism. They may even label him different, call him slow or see his disability above all else. Seeing and experiencing these type of discriminatory actions is something that causes me a lot of sadness and frustration. When it happens I sometimes feel like I got hit with a sucker punch and the wind has been knocked out of me. I am unable to focus on anything and in that moment I struggle to try and find some way to channel that anger into something positive. I just sit there and wonder why is it so hard for special needs parents and families to find compassion and patience from others.
My experience these past four years as a father of a child on the spectrum has done something rather unexpected. It has completely destroyed the wall I had built around my feelings. I now allow myself to experience as well as show others a full range of emotions and I have moved past the notion that I should show indifference or stoicism. Going forward as we continue to advocate on our son's behalf we will be faced with a whole new set of challenges. We will be prepared for some but not all of life's adventures. I will run through a gauntlet of emotions and for the first time in a very long time it doesn't bother me who knows it.
When I watched my older son struggle through his acid reflux problems and crying fits as a baby, a part of me was affected in a way I didn’t know possible. He just couldn’t get comfortable. That was only the beginning. Then as he grew older we noticed his lack of speech along with the extreme sensory issues. All of this was accompanied by tantrums. I don’t know of a single day the past four and a half years where there wasn’t something to worry over or obsess about. From the illnesses, doctor appointments and evaluations to crying fits, tantrums and frustration for all involved, I now have a hard time imagining a time or a place where autism was not in my life or a part of my everyday thinking.
I’ve discussed this before and I will reiterate the same idea again, what happens when you become so involved with autism and helping your child that you have a hard time connecting with others that are not affected? Is that something that other parents of children on the spectrum are concerned with? Does that make me a bad son, brother or husband if I fail to connect with family because I am too focused on special needs?
As a special needs parent I know there are people out there who think less of my son and feel the need to remind others that they do not approve of certain behaviors associated with autism. They may even label him different, call him slow or see his disability above all else. Seeing and experiencing these type of discriminatory actions is something that causes me a lot of sadness and frustration. When it happens I sometimes feel like I got hit with a sucker punch and the wind has been knocked out of me. I am unable to focus on anything and in that moment I struggle to try and find some way to channel that anger into something positive. I just sit there and wonder why is it so hard for special needs parents and families to find compassion and patience from others.
My experience these past four years as a father of a child on the spectrum has done something rather unexpected. It has completely destroyed the wall I had built around my feelings. I now allow myself to experience as well as show others a full range of emotions and I have moved past the notion that I should show indifference or stoicism. Going forward as we continue to advocate on our son's behalf we will be faced with a whole new set of challenges. We will be prepared for some but not all of life's adventures. I will run through a gauntlet of emotions and for the first time in a very long time it doesn't bother me who knows it.
Tuesday, November 23, 2010
Teaming up with another special needs Dad
The majority of the blogs out there that focus on parenting and raising special needs kids in particular are written by moms. I have met a few other fathers of special needs kids through my son's school and also networking on Twitter. One dad in particular, Stuart Duncan (Twitter: @autismfather) has a pretty cool and informative site dedicated to his family's journey with autism. I have a link here on my page that will direct you to his site (Check out the Blog List on the right). Once he sent out a message looking for guest writers, I decided I would like to contribute. Please click here to read my first post...
Sunday, October 17, 2010
Battling the 'normal' mindset
I've always been bothered by the expression, "Things are back to normal", mostly because of the last word in the sentence (I won't use the word but for the sake of this post I'll make an exception). Also I'm not sure but it seems it could be a substitute for "I like my routine and while at times it may vary, please don't do or say anything that calls my perception of normalcy into question". I suppose my stance comes from cultural relativity more than anything. It is important to respect other practices and beliefs because with all the different languages and religions around the world you should keep in mind that what you do or say may look weird to someone raised under another set of ideals.
How does this relate to autism? Well, some of the stuff my son does would cause many to start the "that's weird" or "that's not normal" rants. I believe that those phrases are helping to reinforce discriminatory views across the board. It is ridiculous to think that what you say or do is 'normal' and when someone either acts or speaks differently than they are 'abnormal' or 'weird'.
This causes families dealing with developmental delays such as autism quite a lot of stress and worrying. Not only are we trying to teach our children skills so they can catch up to their peers but we are also forced to deal with people who think our kids shouldn't even be in the same class as their son or daughter. As if just by being in the room, a child with autism is going to cause other students to begin to struggle academically and socially. This is something that causes me a lot of anguish. No one really knows what goes on behind the scenes. I don't know how much work you or anyone else puts in to help their child. I cannot know because I'm not there. As far as my son is concerned, nobody was around to see all the work he has put in to learn limited language skills and how to use the bathroom. What about how long and hard he, his parents and his therapists worked just to get him to sit at a table and focus on the task at hand? As far as we're concerned we aren't trying to normalize anyone. In fact we are lucky to have a special person in our lives and we are helping guide our son on his journey as he acquires skills needed to make his life as fulfilling as possible. I would also like to add that Diego is funny, sweet, and overall an awesome boy! So you can keep your 'normal' tag, we don't want or need it.
How does this relate to autism? Well, some of the stuff my son does would cause many to start the "that's weird" or "that's not normal" rants. I believe that those phrases are helping to reinforce discriminatory views across the board. It is ridiculous to think that what you say or do is 'normal' and when someone either acts or speaks differently than they are 'abnormal' or 'weird'.
This causes families dealing with developmental delays such as autism quite a lot of stress and worrying. Not only are we trying to teach our children skills so they can catch up to their peers but we are also forced to deal with people who think our kids shouldn't even be in the same class as their son or daughter. As if just by being in the room, a child with autism is going to cause other students to begin to struggle academically and socially. This is something that causes me a lot of anguish. No one really knows what goes on behind the scenes. I don't know how much work you or anyone else puts in to help their child. I cannot know because I'm not there. As far as my son is concerned, nobody was around to see all the work he has put in to learn limited language skills and how to use the bathroom. What about how long and hard he, his parents and his therapists worked just to get him to sit at a table and focus on the task at hand? As far as we're concerned we aren't trying to normalize anyone. In fact we are lucky to have a special person in our lives and we are helping guide our son on his journey as he acquires skills needed to make his life as fulfilling as possible. I would also like to add that Diego is funny, sweet, and overall an awesome boy! So you can keep your 'normal' tag, we don't want or need it.
Wednesday, October 13, 2010
Picture this
I've written about it before and here are two examples...what is going through his mind? He has always loved bubbles and this bubble exhibit at a children's museum we visited was a dream come true for him!
Thursday, October 7, 2010
The Tecpanecatl Family and 30 Stories in 30 Days
Today is the big day! My letter giving background information on our son and his sensory issues has posted at http://www.hartleysboys.com/ !!
Please visit the site and look for story #7 about the Tecpanecatl Family, “A Gentle Boy with a Giant Fear” and leave a comment or question and I will be more than happy to respond. Our experience has opened our eyes and more importantly our hearts to the struggles of all families dealing with developmental delays and Sensory Processing Disorder. I am doing my part to spread knowledge so that we can remove negative stereotypes associated with the disorders and allow everyone to receive access to the therapies and services needed to help them on their journey. Thank you Hartley (@ParentingSPD) for allowing me to share our story.
Please visit the site and look for story #7 about the Tecpanecatl Family, “A Gentle Boy with a Giant Fear” and leave a comment or question and I will be more than happy to respond. Our experience has opened our eyes and more importantly our hearts to the struggles of all families dealing with developmental delays and Sensory Processing Disorder. I am doing my part to spread knowledge so that we can remove negative stereotypes associated with the disorders and allow everyone to receive access to the therapies and services needed to help them on their journey. Thank you Hartley (@ParentingSPD) for allowing me to share our story.
Tuesday, October 5, 2010
If I could only catch a glimpse
I often think how helpful it would be if I could view the world from my son's perspective. If I had a few hours or a day even, I would finally understand how certain sounds feel to his ears, how he interprets language and find out what type of thinker he is. Why do I bother to think about something that isn't even possible? During a recent conversation I had with my sister I mentioned to her how much the average person takes things for granted. Take a typical day, from the time you wake up until the time you go to sleep and stop and think how you would function if you perceived the world differently. Imagine if all of the sights and sounds and sensations were scrambled. Even if there was only a slight jumbling involved, the results would alter everything about you and how you handled yourself. I told my sister that once he is able to tell us, we will finally know how our son views his surroundings. Please let the words start flowing.
Before he was able to use any words, our days were filled with a lot of guessing and we weren't right all the time. He was frustrated and it was (is) hard to see him upset. Most of my responses when I'm asked why he reacts a certain way start with "I think..." , "I'm not sure but most likely..." or "Probably because..." Do you see a pattern there? A lot of guessing is involved.
After I try to put myself in his shoes for a moment I stop and think if I really do want to see the world as he does for any amount of time. Would I be afraid of what I saw or felt? Could I ever look at the world the same again as I would constantly feel sorrow and pain for what my son experiences on a daily basis? Would I ever be able to stop worrying about him? Who am I kidding? To some extent, all of that is already true.
Before he was able to use any words, our days were filled with a lot of guessing and we weren't right all the time. He was frustrated and it was (is) hard to see him upset. Most of my responses when I'm asked why he reacts a certain way start with "I think..." , "I'm not sure but most likely..." or "Probably because..." Do you see a pattern there? A lot of guessing is involved.
After I try to put myself in his shoes for a moment I stop and think if I really do want to see the world as he does for any amount of time. Would I be afraid of what I saw or felt? Could I ever look at the world the same again as I would constantly feel sorrow and pain for what my son experiences on a daily basis? Would I ever be able to stop worrying about him? Who am I kidding? To some extent, all of that is already true.
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