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Cathy Jameson's Sunday Age of Autism Read: eMotions

Posted Nov 28 2010 12:00am

Thankful leaf By Cathy Jameson 

Turkeys, pumpkins and apple pies. Thanksgiving is all around me even though my kids have yet to carve their Halloween pumpkins into Jack-o-lanterns. The pumpkins are sitting on the front steps looking quite festive but rather plain Jane. I wish I felt guilty that we didn’t do that fun activity but I don’t. I'm preparing to host guests over the holidays, and I can’t wait to have someone else to cook for besides my kids! I used to like to cook, but getting little turned-up noses to the meals I present is a drain.  I hear more “No, thank you” mealtime responses than "Yum, may I have some more?"

This time of year reminds me of how incredibly busy I am. 2010 has been one of the fastest years I’ve ever experienced—even my children are telling me that the holidays are already here. I’m shocked that I only have one more page on my calendar to turn before a new year arrives!  I didn’t get everything done that I had hoped to do this year.  I haven’t been able to read everything that I wanted to read. I can’t catch up on things I put off months ago, and I dare not look at my ‘to do’ list. It’ll take longer than a week to get through it because I swear that list grows when I’m not looking.  What I have been able to do this year is connect with more people who are just like me:  busy, tired yet determined.

I find that I’m like so many parents in the autism world, even though I’m trying to kick my way out of it. Like other parents, I’m on a mission to heal a child. My child has the potential to be so much more, and I have the courage to try to get him there. Other parents believe similarly. We’ve turned from ordinary people to dedicated and sometimes annoying advocates.  This happens after we’ve been told “No,” “Never,” “Not possible,” or “Huh?” when talking to our children’s providers. Those responses served as the catalysts that emboldened us to blaze into territories we were told not to go. We believe that anything can and will be possible for our kids and no one should tell us otherwise.

I didn’t always have those feelings of empowerment. For a time I almost settled for the cookie-cutter treatment plan presented to me, but after having slow or no progress with Ronan's development, I knew changes had to be made.  I started to take a more aggressive approach with regard to Ronan’s needs.  I researched more on the internet and joined several message boards and online support groups. Because of my journey into cyber space, I ran into a few of the same parents online just about everyday.  I felt an immediate bond with several of these people and made a point of staying in touch, even as our paths diverged.  Ronan and I have picked up quite a few friends over the years and have even had the opportunity to meet some of our e*friends in person. 

My new group of friends grounded me and gave me strength then, and they still do. They lift me up when I am at my weakest. I’ve been privileged to bear witness to the strength of their spirits because of where their children's needs have brought them. That strength is quite powerful to behold, even over the wires. So many families are under so much strain—be it physical, emotional, financial, or spiritual.  Since we have a great understanding and are similarly connected to each other’s personal experiences, we don’t question the emotions that pour forth when we hear of another death by drowning. We expect one another to shake both fists in anger and frustration when we read about a new restraint and seclusion incident. We understand the tears of joy when a wanderer is found safe and brought back to their home. We might meet as strangers at mind-numbing conferences, but we leave happily as life-long companions, buoyed by the knowledge that another person understands.

I've grown accustomed to being introduced to new parents via my internet friends.  I also have an endless supply of go-to warrior parents that help meet my needs my needs—answer a question about seizures, remind me of the name of a book, tell me that things will be okay when all I see is negativity in front of me. I've read and heard that some parents of special needs children part ways with family members because of their child's diagnosis. Disagreements arise regarding how to rear the child, how to spend money on treatments or how to handle the child's unfortunate disruptive behaviors.  Those disagreements can tear a warrior parents' extended family apart.  So back to the online group of e*friends they go for the emotional support they should be getting from their families. Sticking up for each other, even if it's just a pat on the back or a 'you can get through this' comment reminds these friends that we are all here to help. e*Friends are like family and will be forever.

My friends know my son’s story.  They see how hard it is to raise him.  They know how much of a strain it is on my family.  Would I go back in time to make this thing that happened to my son never happen?  You bet I would!  Since I can’t do that, I’m going to keep sharing Ronan’s story—the highs and the lows because they are part of what makes him who he is.  He doesn’t complete me or every goal I have in life. But Ronan did turn me into someone I didn’t think I would ever have the guts to be.

We are in a season of giving thanks, and I’d like to offer a simple but heartfelt thank you across our community.  Without Ronan’s need to be recovered, I never would have found this group of amazing and strong people. Thank you doesn’t sound big enough for how I feel about everyone, but here it is.  To the big “celebrities” like Kim, Mark and Dan and to Ronan’s four-year old sister who insists she is his first teacher—thank you for showing the respect that you have for children like Ronan.  You believe when the common man won’t. To the journalists who won’t stop writing and reporting about our children—you are my IV drip of truth.  To the e*friends I have made along the way—your stories of triumph and success are a balm for the continuous open wound that Ronan’s struggles are for me.  To my family who puts me on a pedestal saying, “If anyone can do this, it’s YOU!”—you have no idea how much your faith in me means. Because of the great distance between our home and yours, you only see glimpses of Ronan.  That means that you more clearly see the progress he has made since your last encounter with him, and you can't wait to see what else he's going to do.  That makes me proud.  I’d even like to thank the adversarial folk out there (they know who they are)—your negativity just fuels the fire that I and the other parent warriors need to turn things around for our children and for our community as a whole. Through the struggles and obstacles you placed in our path, you inadvertently made all of us stronger.  We are one now, this group of us, and we won’t mind taking you down.  Finally, to Ronan—every day brings you closer and closer to greatness.  Thank you for turning me into the Mommy I am today. Without you, I might have been just a boring old soccer Mom ;)

Enjoy your Thanksgiving like I plan to enjoy mine.  Autism doesn’t take a vacation, so I will remain on high alert as if it is any other day.  Surrounded by everything that my family brings to the table, my toast to all of you will be, “To our kids’ future, may it be bright!”  May you feel blessed and thankful today and always.

Cathy Jameson is Contributing Editor for Age of Autism.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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