Showing posts with label autism awareness month. Show all posts
Showing posts with label autism awareness month. Show all posts
Wednesday, September 28, 2011
Jami Ronda shares..."Why I LOVE Temple Grandin"
"When everything seems to be going against you, remember that the airplane takes off against the wind,not with it."
Henry Ford
Having Temple Grandin in the "neighborhood" made me even more excited to share the reasons why I love this woman so much! I got to see her last year at a Future Horizons Autism seminar, where she and Tony Attwood (the leading Asperger's expert in the world) spoke to us all. Being in a hall with so many people who "get it" and hearing from the most knowledgeable and gifted speakers on the topic of ASD and Asperger's...it was a special kind of heaven. Like a blissful classroom. (Never before could I put those 2 words in a sentence!) It was the best couple of days I've had since we got our son's autism diagnosis.
When I first discovered Temple a couple of years ago and watched some of her teaching videos on You Tube, I was blown away. I didn't know of anyone who'd accomplished so much in the face of adversity and has taught so much to countless others. If you are not familiar with Temples story, check out the short You Tube video below where Claire Danes did a great job bringing her to life on the big screen for us in the movie "Temple Grandin".
So, here's my list of "why I love Temple"
1. We have a couple things in common: I was surprised when she described how she thinks in pictures, like Google Images, her brain pulls up pictures for things brought up in conversations. I sat there thinking, yes, I do that all the time. As she continued to share I realized that not everyone does that. After that talk, I had to start wondering about my other idiosyncrasies and wonder if I am on the spectrum.
Another thing in common is that I do not mind-and sort of love the smell of a farm, livestock, and stalls.
2. She designs and embroiders her own shirts: That impresses me to no end!
3. Her mother is a hero in her life and incredibly strong: After reading her book titled, "A Thorn in My Pocket", a book written from her mothers perspective, I understood far more about why Temple is the amazing woman she is. The movie left her father out and for good reason; he was not supportive and often agreed with the doctors about institutionalizing Temple. Her mother had to battle constantly for her daughter, often against her own husband.
4. She was a little averse to rules while in college: and for fun tried to see if she could make a master key for her campus (including her dean's office)...she did. I think she made it out of an aluminum can. She had rule-breaking behavior that gives me a lot of hope as we raise an "Aspie" with similar tendencies.
5. She finished college, something I did not do: She had so many obstacles and never let the struggle stop her. Her perseverance and drive (the gift part of her autism) are admirable and she lets us see that there can be good parts to being on the spectrum. She has said, if she could snap her fingers and take away the autism, she wouldn't. I wish I could say the same thing. I'd give anything, to include the use of my legs, if I could take this struggle away from my child.
6. Her life gives me such hope: She is living, breathing inspiration. I think of her on my hard days, when I just want to hide and cry. Thinking of her makes me remember that I can keep putting one foot in front of the other.
7. She is the mightiest advocate for those on the spectrum and is an excellent teacher to layman and professionals. Her life is a gift to us, for without her, I do not think we'd be where we are now in terms of the awareness of autism and it's impact on children. She is full of answers and suggestions and she is living it. She doesn't say..."here are the challenges, wow, autism sure bites"! She has written books filled with valuable advice for parents and teachers. One of the best is The Way I See It. It's full of short and very helpful chapters on topics we (and our kids) deal with every day.
8. She advocated for herself before she ever advocated for our sons and daughters: I'm still learning to advocate for myself, as a neurotypical! (A status that can be argued on any given day.) Her life has so much to teach me.
9. She goes outside her comfort zone for the good of others: People who do that inspire me so much I seriously get warm fuzzies when I see it.

10. She knows and fully accepts who she is: Her life is the life of a hero and I will always be grateful to her and to her mother for being the amazing women they are and being models of how to succeed on both sides of the autism factor!
Jami... is a mom to teenaged quadruplets and wife to her best friend, her knight in dented armor. Her "almost 15" year old crew consists of one girly tomboy and 3 strapping young men, one who was diagnosed with Asperger's Syndrome in 7th grade. Her passion for God/teens/sports is a perfect combination for her position as a Fellowship of Christian Athletes weekly Huddle Leader.
Check out Jami's Blog at www.momsflightschool.wordpress.com and don't miss out on her fabulous Bling Mugs on FB!!!
Monday, April 11, 2011
In honor of Autism awareness month; "To my sweet friend"...an outsiders perspective.
With the rates of autism statistics being tragically high, I am going to assume that there are a many of you out there know someone either closely or a bit from a distance that have a child with autism. This is a far reaching issue. I know several families that have children on the spectrum, but I am most closely to connected to Lindsay and her scrumptious little loves. I might be the only one out here, but I have to assume that it is sometimes a strange place to be...let me explain...I am close, but not immersed...I try to understand, but I'm sure I ever fully can. I am putting the following words down, hoping that they will speak for many of you who like me, are "on the outside looking in"...
To my sweet friend,
You are a woman that inspires me. I have seen the hurt in your eyes, your struggle to make it through even more more day and the strength that you find to do it!
I remember the beginning of this journey for you, before I even had any clue what this word "autism" meant. I had no idea, as I continued on in my new roll as a parent, what you were going through. I had no idea the depth of despair that consumed you...I feel guilty for this; often. If I could go back, I would try to better understand it all, I would have been there for you even more!
There are many things that I will never fully understand in your struggle (no lists here, trying not to cry) but needless to say, Ill be here for you every step of the way, trying. I am so thrilled that you have a group of women who you love that can relate, inspire, teach and love on each other, because my support can not reach the depths that theirs can. I am sorry for the times when I thought that I had found "the breakthrough" and come to you excited. That was before I realized that there are 1000 "cures" out there, and you are bombarded and sick of them. I am sorry for the times my words have been all wrong, the times my focus was not fully on your struggles. I have learned that you are incredibly smart, greatly connected, and you know your boys in ways no one else ever will! I am proud!
I struggle with guilt. Guilt that my children are both "typical" . It's hard for me to celebrate their milestones, even though you say these things don't bother you; and I don't like to come to you to complain, even though you are always there! ( Did you just say "could have fooled me"???)
I am sorry for any advice I have tried to give. I am sorry for ever thinking I knew anything for that matter.
I watch you in your world of crazy, and marvel at how you do it. I watch you take time to guide and teach your boys, ( I wont mention the times that I have seen crazy mommy!) I see you make a million special meals, go to intense doctor appointments and make sure they have all the special things in their worlds to make them run smoother. You are their strongest advocate, and I want to cheer when you go to bat for them!!! But I will never be able to fully see your heart. I will never know the times you have cried yourself to sleep, or punched a wall. I can't feel your anger, your confusion or your pain. And for this, I am sorry, and I hope my love and friendship is enough.
Thank you for being patient with me in my ignorance, and teaching me in the process. Thank you for trusting me with your world. Thank you for letting me love your boys. Thank you for helping to teach me and my children acceptance, understanding and compassion on every level.
My words can't fully express my heart, but I just want you to know just how much you bless my life.
I would like to just share a few things I am learning for the women out there who have friends who have kids with special needs...not because I know it all; I have a ton to learn!!!
Your kids are "typical" not normal. Saying a child without special needs is normal is insinuating that those with special needs are not (normal).
Support her in finding a group of women (or help her start one) that can understand her. We just can't and she needs more than just a listening ear sometimes. That being said; it's always good to be that listening ear!!!
If it does not work to go to movies, play dates, parades, etc...for her children, don't try to make her do these things. And if she needs to cancel because "he" is having a bad day, never be mad or try to talk her into going anyway!
It's ok if someone in public is making comments or looking rudely at her child who may be having a meltdown, it is ok to punch them. Ok so maybe not the best advice, but you can go to bat for her if needed ;).
Do not give her advice! Do not tell other people you meet that they should call her and tell her what they know. If you think that you have come across something that you think could help, choose your words carefully and let her decide if she wants to pursue it.
Do not ever judge! Our glimpses into her world do not give a full picture of what she experiences minute to minute.
If you are a real friend, don't leave her, even if you don't know what to do, or it feels confusing. Be the person to stick by no matter what!
Please, please, please...let her child teach your kids understanding! We need our typical children to be advocates for those who may need someone to stand up for them someday. If we are not teaching our children compassion, we are failing. We are all equal in Gods eyes and the world needs to see us that way too!
Don't Forget to {Go Blue} for autism awareness month.. Check out these amazing mother warriors and do your part to spread awareness about autism this month!
Please feel free to share this, and I would love to hear your perspective if you are a "friend" like me...or share a story about a great friend who has stuck by you if you are a mom of a special needs child.
Wednesday, April 6, 2011
Monkeys on crack? No it's just my kids...
Anyone who has read this blog knows that I'm not the queen of "How To's" but rather usually "How To Not..." But today, my man hands and I are going to take a leap into the unknown and share a little sumpin sumpin about how to "de-crack" "un-hyper" and "sedative-ize" your crazy monkey ... special needs or not, this post is for any mom who has ever muttered "Are you on crack? Why in the heck are you so hyper?" (Oh, is that just me??)
As the mom of special needs boys I have tried ALL different kinds of therapies to help tame their sensory and communication "issues". Along with being
That week our OT (occupational therapist) contacted us about a new study going on a little over an hour south of us. It was a deep compression massage training called Qigong. I had no clue what it was and I didn't care... it was free and offered to address all of the issues Sawyer was struggling with at the time. After getting past my initial skepticism, my husband and I committed whole heartedly to the study... and... IT CHANGED OUR LIVES!!!
Every night I gave Sawyer the 5 minute massage that left him calm and focused. He could literally be stemming (self soothing) and going bazerk and a couple of minutes into the massage he was a limp noodle (in this case, it's a good thing:))... after three months of doing this daily we noticed a HUGE difference in Sawyer's sensory issues, he started sleeping better, talking more, having less accidents, less melt-downs and he was dramatically less aggressive. I have since become a HUGE advocate for the Qigong Sensory Training Institute in Salem.... because they gave us our little boy back.
We still give "Pat-Pats" (that's what we call the massage in our house) pretty routinely... and honestly they're NOT just for kids on the spectrum. Lots of typical kids have sensory issues, melt-downs, trouble sleeping and are hyper... this can help them too! I use it on my youngest, who is not on the spectrum and have seen great results!
So here it is... 12 simple techniques that could make your life ohhh so much better!
{All information from the Qigong Sensory Training Institute... I am not a trained professional... I am a mom... try at your own risk... don't sue me if you don't get the results I did... okey dokey that's my waiver:)}
Cup you hands and starting at the top of the head pat with one hand down to the heal... following the dots on the diagram.
{For Calming}
Similar to movement 1 start at the top of the head and pat down the body to the heals with both hands.
{Helps Skin Feel Better}
Starting on top of the head use both hands to pat down the outside of the body to the ankles. (we just cup and press over ears... we don't pat)
{Helps With Temper}
Start at the ear (make sure you don't pat too hard over the ear and that your fingers are a little open) pat down neck over shoulder and then to the tips of the fingers on each side.
{Helps with Listening}
This is one of my faves... it encourages eye contact and is a sweet social time. Just wiggle their arms like a spaghetti noodle up and then back down on each side.
{Helps With Social Skills and Opening Up To People}
Rub each finger and thumb three times... if it seems to tickle you can just grab all fingers and compress three times and work towards doing it on each individual finger.
{Helps With Connection and Communication}
Slowly press with both hands on the front of the chest down to the ribs.
{Helps Calm}
For a little one with "normal" tummy function rub the stomach firmly and slowly clockwise 9 times, counter clockwise fast 9 times and then clockwise 9 times slowly... IF your child is constipated start with counter clockwise 9 times then clockwise 9 time and back to counterclockwise 9 times.
{Helps With Tummy Problems}
Using both hands pat down the thighs to the tops of the feet three times.
{Helps Keep Tummy Working}
Here's a video of the massage... we have modified some of the moves to fit Sawyer's needs... you will also have to figure out the right amount of pressure to use on your child.
Firmly rub from back of the knee to back of the heel 9 times or until the leg relaxes.
{Helps With Sleep}
Massage each toe three times. Again in your child is tickelish, just grab all toes and squeeze them 3 times... working towards the goal of doing each one individually.
{Connects Back To Belly Center}
Grab both feet using your pointer and thumb, squeezing firmly right under the ball of the foot, and push the feet towards the rest of the body.
{Helps Brain To Learn}
Let child lay down and rest until they are ready to get up afterwards.
For more information or to order your own DVD/book visit www.qsti.org
If you're really interested in seeing what this looks like in motion... here is a video of me doing it on my son... he was pretty wound up before and this calmed him and got him ready for bed...
Facebook Login Labels: autism, autism awareness month, DIY, DIY massage, family, hope, hyper kids, massage, parenting, qigong, sensory issues, therapy
Wednesday, March 30, 2011
{Going Blue For April} And Maybe You Should Too!
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| Stats courtesy of Autism Society of Oregon |
April is autism awareness month... so why should you care? Because Autism probably looks a lot different than you think it does... AND because 1 in 91 children nationwide are diagnosed with it every year. If you're new to this blog I should mention that Sawyer and Thatcher, my two oldest have PDD-NOS, a form of autism. Sawyer knows no stranger, he has no clue about social boundaries and is what we call "hyper social". He loves to hug everyone and more than once has decided a stranger's boob also doubles as a great hand rest.
While I can think of hundred funny stories to share about my quirky guys, autism can also be a lonely place. Friends and family often pull away because they don't know how to help and honestly I find that it's easier just to stay home than it is to go out and brave the stares and comments of judgmental on lookers. After our middle son Thatcher was diagnosed I kind of went into a deep depression... there were nights (after he had spent ALL day screaming) when I honestly told God that it would be ok with me if I just didn't wake up in the morning... I know that's total drama, but I didn't know how I was going to make it one more minute... much less a life time with these special boys who needed so much more from me than I could give them. (OK, I promise you won't need prozac to finish this post.)
My point is... my boys are amazing... A-M-A-Z-I-N-G!!! They have given me so much perspective and they have taught me to find joy in every little victory... but there were days, and still are days, that are rough... and having the friends and family and support system that I have, is what gets me through. But I wonder how many thousands of moms go to bed at night hopeless, alone and lost... who desperately need a friend who just gets it... who doesn't judge or give them advice, but who can just be there. Someone who can accept and love all of the amazing things about her child... someone who see's how many gifts her little one has to offer. I'm writing this post because there might be a day when you need to step up and be that friend, that sister, that mother... who just gets it.
During the month of April not all of our posts on EMM will be about autism... but we will be going "blue" to show our support and spread awareness. We will also have links at the bottom of all of our posts to other mommy blogger who are also "Mother Warriors". So check them out... read their posts and choose to educate yourself about a growing epidemic that possibly affects someone you know.P.S. I am the biggest weenie ever and I hate public speaking but I am speaking on this exact same topic Friday night at an Autism Gala... your thoughts and prayers would be very appreciated since my pits get sweaty and I throw up a little in my mouth just thinking about it:)
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