I recently began a journey. I call it Tyler’s Train: A Mother’s Journey to Improve the Lives of Autistic Children. Tyler is my eldest son and he was recently diagnosed with mild, high-functioning autism. For the best case scenario that we have, this has been a huge, life-changing process. One that is both extremely difficult and extremely joyous – because it is hard to know your child will always have a hard time connecting with the world and fitting into the mainstream way of doing things, but it is so rewarding to be a mom and each success is monumental.
I tend to set really high goals for myself and then become very disappointed when I don’t meet those goals every day. It is a big waste of my time and energy to set myself up for this, but I have done this for a long time. Setting high goals for my autism awareness efforts is affecting me more than any other goal in the past because it means more to me than any other goal.
So for the first part of my journey I am actually having to do a lot of self-changing and self-learning. I knew this would be a difficult journey, but I am already discovering I am on a completely different path than what I thought I was on a week ago.
One of the hardest things is that my life is still the life I had before I began this. I am still over-stressed, over-worked, confused, fearful, and EXHAUSTED. My world has literally shrunk to the size of my house and my office at work. It has been a long time since I had anything leftover for anything outside of surviving being a mother, a wife, and an employee. So now that I am putting in all this extra effort to try to do some good, life gets easier right? Ha! In the past week the entire family has gotten the stomach flu, Benny’s shoulder surgery wound has started reopening, huge medical bills are showing up in the mail, only three of my family members have even bothered to read my new book, work has major issues every day, and the diet I am on because my doctor says I am gaining weight too quickly and that something is wrong is totally kicking my butt. (i.e. I would kill for Taco Bell right now. I haven’t wanted Taco Bell in years!)
I know everyone out there has a cause that is near and dear to them. So how do you advocate for what is important to you successfully? Well, the answer I have learned this week is that you have to accept success for what it is as opposed to what you want it to be. My mom told me this last night. She said that when I get to the end, the end will be a success. I have heard advice like this before and I was never really interested in anything but the best result possible.
What never occurred to me was to actually change not the end result, but my entire definition of, “Why am I doing this?” Am I participating in Walk Now for Autism Speaks because I want to raise as much money as possible for Autism Speaks? Yes. BUT I think the success I need to be focused on and the purpose I need to be aiming for is visibly showing my support for Autism Speaks by showing up that day and walking 5K because autism is important in my life. Will I be disappointed if I don’t raise 10 billion dollars for them? Yesterday my answer would have been yes. Tomorrow my answer might be yes. Today my answer is “not as much.” And I am really excited about doing this walk. I want to show up my Team Ty-Ty t-shirt and walk those 5K and raise my fist in the air and yell, Yea!
I think that if you are really frustrated because you want to be making a difference but are struggling to raise funds or talk to people or reach your goals that you shouldn’t feel like you are failing. I think the fact that you are even struggling with this and thinking about it means that you are changing something on the inside. You are becoming less selfish by spending time thinking about something outside of yourself instead of focusing just on yourself. This may not manifest itself in more donations or book sales or any other tangible goal you have set for yourself in your efforts. But it might change how you interact with other people. What you may end up with down the road is that you are a better friend, better sister, better daughter, better mother, better donator to others’ causes, and just a better person. You may become more open-minded about other ways in which you can contribute to the cause you are so desperately trying to help.
So keep focusing on the Silver Linings of every day, even when you are so frustrated that your advocacy isn’t going anywhere at the moment – despite how hard you are trying. I might not have raised any money for Autism Speaks yesterday, but Tyler crawled into my lap and snuggled with me last night – which was not something he would have done two years ago. It is a hot day, which means somewhere else it is a cold day – which means that the weather is doing what it is supposed to do and I probably don’t need to worry about any locust plagues today (sometimes you gotta get creative!).
Also remember that you probably have an autistic person in your life and you don’t know it. That means that you mean a whole lot to a person who isn’t able to let you know it. So everyone has a secret admirer who appears to be a distant friend face-to-face but a who is a great texter if you need to talk and who has a different detector for social norm so they aren’t going to judge. You are not as alone as you think you are.
(C) Rachel Flinchum 6/25/2013
And because I am actively advocating for autism I would like to share the following links with you. The first is for my Walk Now for Autism Speaks 5K that I will be participating in this fall. I am accepting donations and team members. www.walknowforautismspeaks.org/arkansas/teamtyty
The second is my book that I wrote in an attempt to get my unique perspective out into the public. Autism is a broad spectrum and what I have found out is that I find little bits of info and advice here and there that I can apply to Tyler. So I thought if I could get what has been helpful to us out there, then maybe another mother might be able to take bits and pieces from it. http://www.barnesandnoble.com/s/tyler-s-train-a-mother-s-journey-to-improve-the-?store=allproducts&keyword=tyler%27s+train+a+mother%27s+journey+to+improve+the+…
The third is my Etsy.com store. I will place things for sale on it that I will use to fundraise for Autism Speaks and AAROC. I will list in the description how much from each sale will go to the cause. www.etsy.com/shop/tylerstrain
And the last two links are for Autism Speaks and AAROC. Two organizations that help families dealing with autism and that have a local presence here in central Arkansas.