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.

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!

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.

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.  

SPD and 30 Stories in 30 Days

Hartley Steiner, a wonderful advocate for Sensory Processing Disorder (SPD), has put together a month long event to help raise awareness for SPD.  Her "30 Stories in 30 Days" campaign will feature a collection of stories from parents and professionals about their experience with SPD and the many challenges that the individual and their families face on a daily basis.  Please click to view the background for the event as well as the amazing prizes people can win.

The fundraiser also aims to procure donations for the SPD Foundation and I have added a widget to the upper corner of my blog (see it over there at the right?) which makes it easy to donate to this great cause.

I am excited to have an entry featured for this project and it will be posted the morning of October 7.  Writing the story was emotional for me and I trust that people will get a good sense of how much our son's sensory issues have impacted our lives.  I am proud to be a part of the event and hope you will find the time to read all of the stories that are featured.   

I believe we can handle it

"But can we handle it
could we dismantle it
or should we fear the void
and just be para-paranoid?
if it's understood
it could be used for good, and would
if you will believe in
all we can conceive"

The lines above are exceptional lyrics from 311off of their Soundsystem album. As I heard the words the other day it dawned on me how much they can apply to spreading autism awareness and helping people understand more about the disorder. (This is from the song “Evolution” and yes, I listen to music that many would consider old at this point but I don’t care)

First the "But can we handle it?" lyric could be the question a parent asks themselves over and over as they navigate the autism journey. There will be days when you just want a break, to shut things out for a few hours but that is not our reality. The challenges are everywhere but so are the fun and the silly times and with each accomplishment you and your child will feel pure joy. As an advocate, are we able to maintain our stance in the face of adversity? When opposing opinions are presented and our views threatened, can we persevere and handle ourselves accordingly?

What about the line, "Could we dismantle it?" One of my goals is to help dismantle negative stereotypes associated with autism so people can see past the perceived differences and recognize they are interacting with another human being. Maybe they have a speech delay or lack of social skills but if you just give the person a chance, they may just amaze you with all they have to offer. I know I would also like to break down the walls that currently surround my son's voice, finally allowing him to share with us his thoughts, the things that make him happy, sad and afraid. I know that it will happen but I get anxious waiting…

Next up is the lyric, “should we fear the void and just be paranoid?” If we allow ourselves to cave under the pressure, who will stand up for our children? Can anyone else really know your son or daughter as well as you do? There will be difficult times but we should do what we can to conquer our fear of the unknown.

Read this line again:
“If it’s understood it could be used for good, and would if you will believe in all we can conceive”

Amazing. Think about this for a minute. I bet many of you know someone with autism. Maybe your son or daughter has been diagnosed. Or a grandchild, sibling, niece or nephew. It could even be a friend or neighbor.  I implore everyone to take the time to learn about autism and to help educate others.  Together the autism community and its advocates can make a difference. As more people are recruited to joint the fight to help bring about significant change, then all those affected by autism can begin to access the services needed to set them on the path to success. The first step will be to believe in all that can be accomplished…

At the end the song they answer the questions:
"Yes we can handle it
we could dismantle it
we should not fear the void
and just be para-paranoid
if it's understood
it could be used for good, and would
if you will believe in
all we can conceive"

Our ultimate autism warrior mom

Jessy,
Our journey together has been filled with an abundance of love and laughter. I was apprehensive about moving to New York on my own and working in Manhattan, even on a temporary basis. Coming from the Midwest I was unsure of what to expect and was quickly overwhelmed with all the commotion and speed of the city. What are the chances that you and I would meet and under the circumstances in which we did?

Our lives have also been touched in a way I never thought possible. Despite the challenges of raising a child with autism, Diego has taught us so much more about ourselves and life in general. We face each obstacle together and our two sons are extremely fortunate to have such a caring and compassionate mom. Your patience, support and determination to help Diego are the qualities that make you our ultimate autism warrior mom.

Special needs parenting has proven to be difficult but with each round of tears also comes the joy of seeing our son make significant progress. Today I am reaching out to simply say one thing to you: THANK YOU! Thank you for bringing your hope, love and guidance into the kid's daily lives. Thank you for always knowing what to do and say when the kids are upset or sad. Finally, thank you for being there for this special needs father, as I spread awareness, acceptance, and knowledge of autism on behalf of our beautiful son, Diego.
Happy anniversary!
Love,
Lou