What have I learned about Autism? I question myself daily. I open my mind and absorb everything. I can throw out statistics but whose statistics are they? I can quote the CDC, the FDA, the Pro & Con this or that.. but what have I truly learned? What I've learned best is to follow my heart.
My son is 3 1/2... in our world even if he was diagnosed at birth (which is impossible) he would still be considered "newly diagnosed". I would still be considered "a new mom". His diagnosis was actually around 2yrs.
So a year and a half later what have I learned?
I've learned that a child throwing a fit in public, may actually have underlying issues.
I've learned to be a better parent.
I've learned to keep an open mind. I've learned that regardless of the situation the tacky yet true statement "opinions are like assholes, everyone has them" is still relevant. I've learned to say what I feel and then STFU. Because sometimes if we shut up, we may just learn something.
I've learned to be less judgemental.
I've learned to not be too hard on ignorant people, they are just a product of our failed educational system.
I've learned that Autistic Children are resilient.
I've learned to not blog about things I'm still figuring out. I've learned to not lash out at people and organizations that don't believe in the things I do. I've learned if I have something profound to say, to say it only if I've experienced it personally. I've learned not to judge another persons experience.
I've learned that I am the I in IEP
I've learned that the blogging community can be full of cliques. I've learned that I will remain true to myself and not participate in blogs where the blogger encourages that type of behavior.
I've learned that even though I am not a huge fan of some organizations that I can still empower my community by attending their events. I've learned by opening my mind and attending said events, I am able to make connections with my local Autism Community. I've learned that by doing all of this that maybe, just maybe they have served the purpose I need to further my activism in my own Community. I've learned to hold my judgement and participate then navigate.
I've learned that the government is sitting back laughing and is the real puppet master of The infighting within the Autism Community.
I've learned to state my opinion and then move on. I've learned to allow others to have their own opinions, no matter how aggressive and demeaning they may seem.
I've learned if I truly want to be here for my son I had to change my lifestyle and exercise daily.
I've learned that my typical kids deserve just as much time as my Special Needs Son.
I've learned to choose my battles wisely.
I've learned that just because your a big star with a big name does not mean that you care about the little people whom Autism has engulfed, financially, physically, & emotionally. I've learned not to lash out at you for your ignorance. I've learned to know what your about and store that in my memory bank. Because one day i will be a 501(c) and you will hear about my non-profit. And I will thank you for teaching me how a non-profit should be run, and who a non-profit should REALLY HELP.
I've learned that for some people GFCF is their families way of life, and for me GFCF means Get Food Cheap and Fast.
I've learned that although our family doesn't "do the diet" that I can still collect recipes and point families that do in the right direction.
I've learned that we can all get along and respect each other. I've learned that $5.00 to donate to shut it down for a day for Communication Shutdown doesn't mean we are tellling people the rest of the 364 days of the year we won't advocate vocally, and online, daily for our kids. I've learned you can advocate in Silence and be louder than words. I've learned that if you don't want to shut down, its okay to have alternatives. I've learned we can agree to disagree and not disrespect each other.
I've learned that sometimes he is just being 3 1/2 and needs to be treated in that manner.
I've learned that my loyal blogging friends whom are Non-Special Needs Bloggers really do "get it" and care about our children.
I've learned that nobody but me can change my communities services for our children. I learned if you want real change step up and do it. Stop complaining that they have "nothing" for Autism here. Yes, some Rural areas and dirt road towns its a lot harder. But I've learned you have to make the difference and not rely on others. I google Autism Events daily. I love the Autism Calendar... and Google is my Bitch.
I've learned that you can turn a non-autism event into an Autism Event. I just attended a CPR class and invited Autism moms to come with me. I met the Fire Department and opened the conversation about Autism. Could that have possibly saved one non-verbal child's life in a fire? I'd like to think so.
I've learned that if I truly want to learn something about Autism to take most things with a grain of salt and to listen to Mothers who have struggled with No services. They have been labeled as the problem, they have lived with absolutely no awareness... THEY ARE OUR TRUE SOLDIERS... parents like Brandons Mom-Amalia Starr, Aspergers2Mom-Elise, Eustacia Cutler, and my very dear local mom of an Autisic pre-teen-Marisol Romeyn (who has taught me more than any book, blog, doctor, or manual).
I have learned that to truly spread Autism Awareness WE MUST RID OF THE INFIGHTING WITHIN OUR OWN COMMUNITY. I've learned that debating back and forth between each other only causes confusion... and most importantly our message gets lost and our children suffer.
What have you learned?
Saturday, October 30, 2010
Subscribe to:
Post Comments (Atom)
20 comments:
*this is me giving you a standing ovation and uproarous applause* Tell it momma Tell it. I think it is the same in all mental disorders , especially those that have a spectrum of diagnosis. I saw our old pastor today and when he found out my oldest was drawing disability for his issues he said well maybe he can get past all that and grow up.. Seriously. Ty buttmunch for reminding me exactly WHY I left your church..
Wow. Great entry! My grdtr was diagnosed at age 2 and four years later I am still learning. You covered so many issue so very well!
This was my first look at your blog but I can promise you it is not my last!! {{applause}}
Jane, great post, and I am honored to be mentioned in it. Thank you so much!
I have learned that I am still learning after all these 37 years. I have learned to never underestimate our special needs children or adults. I have learned to listen to my heart. I have learned that there are many ways to get to the top of the mountain. I have learned it doesn't matter how long it takes as long as we keep moving up the mountain. I have learned the true meaning of acceptance. I have learned to not fight for my child and his needs, but to get what he needs by communicating with kindness. I have learned that Brandon gave me a purpose, an autism motivational speaker. I have learned I am forever grateful to Brandon for all the gifts he has given me. I have learned so much from my son. He is kind, generous, forgiving, and most of all he is determined. He keeps me on my toes and forces me to think outside the box and be super creative. He makes me think and love deeply. I love what I do and I owe it all to my son, Brandon.
This is such a great post! I love the part about people being ignorant being tied to the "failed" education system. As a parent with a child on the spectrum I sometimes I forget that Mya is not "typical" until adults show their ugly butt and than I remember just how truly amazing and special Mya is to us.
I have just learned that there is a blogger I didn't know about that I need to be following on a regular basis. You have learned so much and are sharing it so positively I look forward to benefitting from that. Thanks Jane, have a great day!
I've learned that you are a resilient, compassionate, continually growing/challenging/learning, person.
You inspire me because I know that you will never be done growing and learning.
Great post. Lots to learn from autism...
YOU ROCK and I love your heart and your spirit.
This is a GREAT post. I know this sounds weird, but I'm glad your son was born to YOU, as you seem like a mom who has her shit together.
I will be linking your post up on Saturday.
I'm curious to know what you think about my friend Dawn's post (I linked it up on Saturday; it's called People-First Language, I think).
OMG, I am speechless. I want to print this out and give it to every parent of the newly diagnosed I come across. Wow! Bless your open heart and sharp mind. You go girl. Make it happen.
Congratulations on an exceptional piece: Dr James Morton, father of Andrew aged 11 with Autism: Founder Communication Shutdown
Thank you all. With out your information, encouragement, and support I may not have learned as quickly. Stay tuned I've decided every year, near November 1st, I will reflect on what I've learned.
I just put this over under my post but want it here too in case you don't see it over there: I am sending this around Facebook today and printing a few copies for my purse, for when I encounter parents of the newly dx'd at Easter Seals. Thanks again.
If I had 10% of your wisdom, tact and insight I would be 100% a better person.
Visiting from Mrs. 4444. I'm an SLP, and if there's one thing I've learned from having students with Autism, it's that there is still so much more to learn. Every child with autism is an individual, but they have so much to offer. I'm glad I stopped by!
An absolutely beautiful post, Jane.
This: "I've learned that a child throwing a fit in public, may actually have underlying issues." is SO TRUE. SO TRUE.
To never judge, because we really have no idea what is really going on. My middle son is ofen judged by people who don't have a clue what he is going through. And of course, I'm judged for it, too. Ignorant people don't realize how hurtful that is.
visiting from Mrs. 4444 and want to say thank you for this post. I too am a 'new mum' and am learning much.
You sound like such an amazing, positive person, with the passion to start your own group and be a leader.
Wow! You are an amazing advocate for your son!
...
Post a Comment