Desert Dry but Still Beating

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My first ever Walk Now for Autism Speaks is in less than three weeks!  And someone in Europe bought my book.

I kinda feel like a rock star.  A little one.

I also just got off the phone with Tyler’s school.  They scheduled a conference to change Tyler’s diagnosis for therapy from uncategorized to autistic.

I work in a clinical laboratory that provides a prognostic test for multiple myeloma.  Before that I worked in cancer research.  I am very familiar with fundraising for a cause, even if I never hopped right on with the advocacy thing before.  So I had a little bit of a high expectation when I started advocating for autism.  This is WAY different.  Much, much harder.

So the fact that I am going to a Walk with a bunch of other families living with autism and that I sold a copy of my book is awesome.  I have been to a couple of other events leading up to the Walk that had a few people from this community there.  They are amazing people.  People who really want to connect instead of just measure and weigh you.  People who know what you have been through and who know what it is like to go alone.  I am thrilled I am getting to spend the day with these people and the amazing friends and family who are on our Walk Team: Team Ty-Ty.

And…I sold a copy of my book.  To a non-family member.  Someone who I don’t even know.

I also have a t-shirt campaign going right now.  Just started today.  www.trycustomink.com set me up with a Booster campaign.  If I sell at least 20 shirts, they will go to print.  If I sell more than 30, money starts being donated directly to Autism Speaks.  Very cool, but I am nervous about the qty I have to sell.  Gotta try though, right?   The link is http://www.booster.com/tylerstrain.  I love the shirts and I think anyone who gets one will love it too.

Still tired all the time.  Still having trouble with the boys at bedtime.  Still have very little time to do anything and almost no time to myself.  But my autism advocacy just registered a bleep on its heart monitor.

Feels good.

I feel like a cactus that goes all year with no rain.  But then the spring rains never come.  That’s okay.  I am not giving up, no matter how long the dry spell lasts.  And when I do feel a sprinkle, I am going to really feel it.

For more info on the walk, go to http://www.walknowforautismspeaks.org/arkansas/rflinchum

From my heart,

Rachel

(c) Rachel Flinchum 9/17/2013

Put the Bitter Pill Down or Step Away from the Microphone

I am a woman.  I am a mother.  I am a mother of an autistic son.  I advocate for of autism awareness.  I have plenty of opportunities every day to fall into the trap of bitterness.

This is a trap that no one is immune to.  Why can’t I raise more funds for autism awareness?  Why don’t people care about autistic children more?  Why isn’t the government doing more?  Why aren’t insurance companies doing more?

For the very same reason that causes autistic children to be so valuable.  Diversity.  If everyone cared about the same thing, then no autistic child in the world would ever want…but the hungry ones would.  The sick ones would.  The dying ones would.  One of the reasons this world is beautiful and diverse is because we all care about, support, and contribute to different things.

If I allowed my own perspective to become bitter, I would filter everything through this negative interpretation.  My friends are not struggling to pay bills, raise their kids, keep their marriage together, and contributing to what life has made a priority to them – oh no, they are simply uncaring and lazy.  This is a BAD perspective.  Bitterness is a very dangerous trap…possibly one of the most dangerous traps you can fall into.

The moment you stop being able to see what is important in other people’s lives, you lose the authority and right to ask people to see what is important in your life.  Instead of a contributor, you become a burden.  You are no longer giving of yourself to autism awareness, you are simply trying to take from other people for autism awareness.

If I ask people to open their hearts to something I am saying, I have to be willing to do the same for them.

If this world had unlimited resources, it would make sense to be completely outraged and bitter if your cause is going unnoticed.  Right now, the United States government is being very slow to recognize autism in our society.  I could fixate on this and see only what is not being done.  But what is being done?  A lot of money is going to other causes…to combat poverty, illness, violence.  Right now, the voice of autism awareness is not doing its job.  We are not making our cause visual, concise, and strong.  So it is hard to listen to us.  Part of this is because the autism spectrum is so varied and the members of its unique perspective have trouble speaking for themselves.  Instead of focusing on being bitter, I need to focus on learning how to do my job better and I need to understand that there are a lot of other mothers and advocates in Washington, D.C. right now who are asking for help with cancer, blindness, poverty, abuse, and a lot of other serious issues.  I would rather the government fix its spending problem than have it commit more than it can afford to every cause that asks.  My son would be better off in a stable economy than a broken one…even if that means shouldering more weight myself.  Carrying a 100 lb load for 2 miles is much better than carrying a 50 lb load for 200 miles.

If you are bitter, you lose your authority and your power.

What happens to the person who only spouts bitterness?  No one listens.  This person becomes the one that people stop inviting to dinners.  Their Facebook posts are quickly scrolled past.  No one really cares about their perspective anymore.

It is impossible to motivate people with bitterness.  Bitterness tastes disgusting, it is hopeless, and it never offers a solution.  People don’t want to put money, time, or effort into something if they don’t believe they will see a result.  That means solid goals, game plans, and a positive belief that change is on the way.  If you are too busy focusing on what is missing from autism awareness, you cannot offer people the good of autism awareness.  The image you cast is dark and negative and ugly.  If you really believed that autism awareness is worthy of people’s sacrifice, you have to show them your dream that is bright and positive and beautiful.

Unless you have contributed to every cause that the people in your life care about, put the bitter pill down, baby – you haven’t earned it.

Remember that Facebook post about contributing to a cause that you didn’t respond to?  The one you didn’t even Like or Share?  Remember that man who came to your door asking for a donation?  Remember that letter you got asking for support?  Remember that car wash or dog wash that you didn’t go to?  You might remember a few.  But you certainly don’t remember all of them.  People simply cannot respond to every cause or need.  Most of these causes and needs slip right past our radar because they are not on our radar.  You will care about what has been put into your life.  That is what gives your cause power.  You don’t drain yourself dry and overextend yourself because you will stay true to what is important to you.

If people didn’t suffer, if they didn’t have to crawl down into the trenches and live out the hard stuff, then they wouldn’t advocate.  You won’t sacrifice for something you can’t sympathize with.  I had to go through what I did to realize how important autism awareness is.  This is how advocacy begins.  This is where it is the most powerful.

But you must remember that other people have lived through cancer.  Other people have had a loved one commit suicide.  Family members have been killed by a drunk driver.  I could continue this list until eternity.  Maybe a friend can’t give to autism awareness because they are doing the exact same thing I am doing, but because their child has cancer.  Would you really want to live in a world where your child had everything, but other children went without?

If you are bitter, you have lost your ability to grow.

Only accepting your perspective means you are no longer seeing anyone else’s.  If you cannot see outside of yourself, you cannot grow.  You cannot reach new heights, or see new wonders, or hear new songs.  Advocating is one of the most powerful teaching tools.  It teaches you perseverance, humility, patience, creativity, and understanding.  If you are no longer learning these things because you are stuck on the negativity of bitterness, please put the microphone down and quit harming the cause.  Other people are having to work harder to undo your ugliness.

Choose another emotion, any emotion.

Get angry.  Yell.  Break something.  Get sad.  Cry.  A lot.  Get happy.  Go crazy hyper.  Laugh at nothing.  This is autism awareness…do not take advantage of your ability to express your emotion.  But get it out and get it done with.

There are people counting on you, make sure their faith is well placed.  Be a positive, strong role model for your cause.  Make your son proud that he has you fighting for him.

Right now I am focusing all of my fundraising into my Arkansas 5K Walk Now for Autism Speaks.  The main website for Autism Speaks is http://www.autismspeaks.org.  They have a focused mission statement that I feel encompasses all the key aspects for autism research, awareness, and support.  If you would like to give to Autism Speaks, I would be honored to be your conduit.  My Walk Fund page is http://www.walknowforautismspeaks.org/arkansas/rflinchum.

I hope my blog has been helpful.  If you have a cause you are advocating for, please insert your cause name any place where I used autism awareness.  I know most of the advancements made for causes like mine have been born in the heart of a family member and have been grown in communities around the world.  Thank you to every advocate who has come before me and who will follow after.  I am honored, and  yet unworthy, to be among you.

From my heart,

Rachel

(c) Rachel Flinchum 7/15/2013

Totally going retro here.  This is Tyler as a newborn.  Yes, I know, he is absolutely adorable.

Totally going retro here. This is Tyler as a newborn. Yes, I know, he is absolutely adorable.

In the Midst of my Weakness, A Bright Light

Yesterday was a bad day for me.  I was exhausted to begin with, so I was feeling everything more and with a much more negative attitude.  Things have just been snowballing.  Tyler has been having more issues with his emotions.  Potty-training is at a dead stand-still.  Ash is in the midst of his terrible Terrible Twos.  Work is work!

I also always assumed, as I have been fundraising for my Arkansas 5K Walk Now for Autism Speaks, that all non-positive responses would fall into one of three categories:

1) No

2) No response

3) Yes, but then no donation

I respect and expect all three of these responses.  I am buying the gas for my car on a credit card right now because my husband was on disability for two months following shoulder surgery.  We have no money right now.  We will have no money for several months while we play catch up from only bringing in one paycheck for two months.  So I am totally aware of the reality of money and how much people have of it.  The only response I get bummed about is #3.  I respect #1 and #2 more because I get my hopes up with #3 and then they get brought back down again.

Yesterday I discovered a #4 and it was NOT pretty.  It started out as a #1 and then continued on into the land of, “Who do you think you are?”  The thing is, I really respect this person and I really respect the honesty that this person holds to and the reasons why she was saying no.  The format that it arrived in was not enjoyable, however.

I also read in the news yesterday that autism insurance coverage for military families is going to have a major setback in terms of maximum dollars allowed to be spent on services for autistic children.  This following the victory of having coverage expanded.  Unfortunately, have coverage expanded won’t be very helpful if you max out your benefit dollars less than half way through the year.

So I cried on the way home from work.  I cried when I got home.  I cried when I started doing laundry and packing for our trip to Nashville to see the folks.  I was texting my mom and talking to my husband.  They were both very encouraging and were reminding me that I set my goals too high (in a very loving and positive way).

Honestly, though – I am exhausted.  Very much so last night.  I have been dealing with a lot of emotional baggage since we first starting noticing serious developmental delays in Tyler.  The past two years have been ROUGH.  They are still rough.  They will continue to be rough.  As a result, my own body and health have seriously declined.  I have gained a lot of weight.  I show symptoms of depression and chronic fatique syndrome.  About six years ago, they found a growth in my thyroid and I had to have half of it removed, so I am on thyroid supplements for the rest of my life.  I went back to the doctor a couple of months ago and discovered just how bad my weight gain had gotten in a relatively short period of time.  I also got the same response I always get when I go to the doctor, “I don’t know why you are sick, why your body hurts all of the time, and why you are gaining weight.”  I think that maybe, if you have been reading my blog, that you and I both know why.  He did however, because of the weight gain and fatique, decide to bump up my thyroid medication.  I am also on Nutrisystem now to try to deal with some of this weight gain.

The result: I am eating about 180 calories a meal while simultaneously being hyped up on extra thyroid hormone.  I have no energy coming in and  I am burning energy like a mad person.  I can’t sleep at night.  I woke up two nights ago at 4 AM and decided to paint.  The consequence: I was a crying, discouraged, exhausted mess last night.  Just because I can’t sleep doesn’t mean my body doesn’t desperately need it.  If I don’t figure out my energy-in/energy-out situation very soon, I am risking a serious crash.  Last night was a wake-up call for me.

So I was dealing with all of this last night and it was not pretty.  As my husband and I were sorting clothes for the next load of laundry, we hear Tyler in the other room with Ash.

History: Tyler has always been a big Angry Bird fan.  He loves to play that and Bad Piggies.  He also becomes easily frustrated with the game.  He doesn’t just want to win the level.  He plays it and plays it until he has found the optimum series of moves and this becomes his standard (Don’t know where he could have gotten this little trait from…).  So we have always been very encouraging of the idea that it is okay to not get it right away.  “Its okay, Ty-ty.  That is a hard level.  Just try again.”  Ash has recently gotten into Angry Bird himself.  At first, it was just to watch the little video clips the game offers, but he has been dabbling in the actual game for a week or two.

So our little Tyler, our son who has had to undergo surgery and countless speech therapy sessions to help him learn how to talk, has been coaching Ash.  “Its okay, Ash.  Try again.”  “Ash, go higher.  You can do it.”

Last night, it was, “Ash, you did it!  You did it!”

Our 4-year-old son was so excited that his little brother had beaten a level in Angry Birds.

This morning as we were getting in the car, Ash decided he wanted his Angry Bird stuffed toy since Tyler had one of his.  I told him I had already packed it for our trip and he would get it tonight.  Ash, of course, did not like this idea.  Tyler reached out and gave Ash his Angry Bird toy.

These are the moments that can take my broken body and my despairing heart and give me new life.  These are the moments that make being a mother worth every pain, hardship, and sacrifice a thousand times over.

Tyler is not the child who throws a fit at the zoo and has to be carried out.  He is not the child that always has to wear socks.  These are just his burdens.  His obstacles that he has to fight against for the rest of his life.  The things he has to overcome in order to live in our world.  It is not his world, but it is the world he has been born into.

Tyler is the child who wants to see his brother succeed.  He is  the child who laughs at my silliness.  He is the child who would rather go without than see his brother go without.

These are the children I am trying to help.  The ones that can have all of this goodness become locked inside of them because their own body is rebelling against them.  Tyler’s own body will always be his biggest obstacle.  But when he overcomes it, he will soar higher and truer than any bird.  He will see things and understand things that no one else ever will.

What these children can bring to our world, our communities, our schools is outside of our scope of reality.  Their world, their reality, is a different one.  I want to see what they see.  I want to smell what they smell.  I want to touch the way they touch.

I want these children in our world.  I want to see them thrive and succeed.  I want my world to learn and improve because they brought in goodness and innovation and beauty from a place I would never have been able to visit without them.

And I want to be able to say thank you.  I want to be able to show them that we love them.  I want to be able to prove to them that all children, all people, are worthy of life, liberty, and the pursuit of happiness.

Please help me release the goodness and innovation and beauty in these children.  Help me raise funds for research, awareness, and support to help these children face and conquer their obstacles.  Every one of us knows what it feels like to really need a hand to reach out and grab ours in our dark hours.  If you have ever reached out and found that hand waiting for you, please consider being that hand for someone today.

My Arkansas 5K Walk Now for Autism Speaks Walk Fund is http://www.walknowforautismspeaks.org/arkansas/rflinchum, and I would be honored to be your conduit for a contribution to Autism Speaks.

Autism Speaks also accepts donations directly at http://www.autismspeaks.org.  They have a store in their website you can look through.

Another good store is https://theautismsite.greatergood.com/store/aut/site.  Right now they have Sock Monkey Ornaments on sale that are super cute.  Each item tells you how much will go to towards helping individuals with autism.

You can also register for http://theautismsite.greatergood.com/clickToGive/aut/home?ThirdPartyClicks=ERU_071213_AUT_m.  You can sign up for daily email reminders for easy access each day.  Going to this site and clicking the red button will generate funds to help autistic children and it costs NOTHING.  You can do it once a month, once a week, once a day.

Thank you!

From the heart of a proud mother of two beautiful boys,

Rachel

(c) Rachel Flinchum 7/12/2013

Short, and simple...and VERY TRUE!!! (Found on Pinterest)

Short, and simple…and VERY TRUE!!!                (Found on Pinterest)

What a Mother Will Do

What a Mother Will Do

What a Mother Will Do Is

Long For You Before You Exist

Mourn the Unborn

Carry You Inside

Labor For You

Care for You When She is Broken

Hold You Through the Night

Know Your Smell

All of Your Smells

Miss Those Sleepless Nights When They Are Gone

Dream Of You

Dream For You

Cry For You

Comfort You

Hold You When You Are Sick

Lay Awake at Night Worrying about You

Swallow Her Pride for You

Feel Pride in You

Laugh with You

Tell Stories with You

Ask You About Your Day

And Really Want to Know Everything

Never Stop Believing in You

Never Stop Fighting for You

Never Stop Fighting Against Your Lesser Self

Will Always Believe You Can Become Stronger

When It is You and Her

She Will Be Your Wall

The Wall That Forces You to Keep Growing Higher

When It is You and Her Against the World

She Will Carry You When She Has No Strength Left

She Will Nurture You When She is Empty

She Will Turn and Face the Lions for You

I will never give up on you, Tyler.

I will never give up on you, Asher.

I will never let you defeat yourselves.

I will never let you accept defeat.

I will not let the lions get you.

Not while I still have a heart that beats.

And I will never stop fighting

To leave you a world that is better

Than the one you were born into.

I will always see the good in you

And push you to greater heights.

I will love your, “I love you”s.

And I will suffer your, “I hate you”s.

I will break when you are breaking.

And I will soar when you are soaring.

I am not the best mother in the world,

But I am Tyler’s Mother

And I am Asher’s Mother

And I will always

Turn and face the lions for you.

by

Rachel Flinchum

Help me bring to our children a better world.  A world of acceptance and diversity.  Help me bring back a sense of community and a desire to put our children first.   1 out of 54 boys and 1 out of 252 girls are being diagnosed with autism spectrum disorder.  We can no longer afford not to face the lions for these talented, sweet, struggling kids.  They bring to us new perspective, new vision, and new talents.  In order to do this, they see the world in a different way.  This also means they communicate to the world in a different way.  By providing contributions to Autism Speaks, you are helping them fund research, outreach, and family support.  These three things combined with the efforts of communities can turn this epidemic from a silent struggle into a victory for all of us.  You may or may not have an autistic person in your life, but you will.  And you will either bless the fact that their family beat the odds and had early intervention or you will wish that somebody had done something to help that family.  Please be that somebody.  Please consider a donation to my Walk Now for Autism Speaks 5K Walk Fund.  100% of donations go directly to Autism Speaks.  www.walknowforautismspeaks.org/arkansas/rflinchum

(c) Rachel Flinchum 7/10/2013

Behind The Scenes

The act of fundraising is an act of vulnerability…for both the initiator and the initiated upon. We receive so many requests for money that it is impossible to give to everything. Lately it has been difficult to give to anything.
I know what it is like to be initiated upon. Internally, I have three responses.
A) My empathy is sparked and I donate money
B) I am receptive but cannot afford to give at this time
C) I am not interested in this cause
One of those three responses is what goes through my mind when someone asks me to donate to a cause. I am not proud of the response (C), but for the sake of honesty…
Ahhhhh, but now I am again in the position of the initiator. And not just for a school magazine or a mission trip to an exotic Latin American country (insert wink here).
I am an open-ended fundraiser. Yikes! Is that even legal or moral? I want to accept money from people as much as I can for as long as I can. Sounds corrupt, doesn’t it?
But the crazy thing is that I will probably never have a penny of it come back around to me. Yes, my autistic son and our family would greatly benefit from more funding for autism research. And we would benefit even further from legislation protecting and providing for Tyler and for schools to have more money to be equipped to accept more children with disabilities in the classroom.
But that is not my Why I Am Doing This. I am doing this because we paid out of pocket for Tyler’s therapy for a year while we worked on getting him diagnosed. This time was spent on a waiting list because we don’t have enough qualified clinics for autism in central Arkansas. I am doing this because I cannot afford to quit my job to take care of my sons fulltime. I am doing this because, while this has been hard and expensive and frustrating, we are the lucky ones. How many families can afford to spend a minimum of $360 a month for one hour of therapy a week? How many mothers are able to work instead of being forced into part-time or no job status because they don’t have anyone to help get their child to therapy or have a daycare that is equipped to care fir their child? How many parents can work full-time, spend hours on the phone with their insurance company, doctors, and therapists, go to special ed school meetings, struggle to keep their child in school or ultimately decide that homeschool is their only option? On top of the extra time and attention that child needs? And the other siblings as well? And the spouse? House?
It is daunting and I am not quite sure how we are going to do it all. But we are doing it now. So I am asking for help for other families who aren’t managing. The ones who are struggling and possibly breaking. The ones whose child can’t get their therapy because its too expensive. The ones whose child really needs that new medicine to be tested or that new therapy technique researched.
This is a big need. Very little money going in and so much needed. So I don’t have a number, or a target, or a stopping point. Every dollar is appreciated, every dollar is valuable, every dollar helps.
I recently met my $1000 goal for my Walk Now for Autism Speaks 5K this fall. I have been asked why I am still trying to raise more. Don’t I think I am making my current donators feel less significant?
I also ask for donations on every blog post and regularly on Facebook. Considering that I was raised in a family where fundraising was considered taboo, do I feel like I am breaking a sacred trust when doing this? Is every request hard? Can I imagine you rolling your eyes and your finger lingering over that unfriend button? Can I feel your frustration because autism advocacy just isn’t your thing?
Yes, Yes, Yes, and Yes
So why do I keep asking every day?
1) This is my life. I am a wife to a wonderful man and I am a mother to two beautiful boys. One of those boys has autism. There is not a day that goes by that I am not thinking about this.
2) We only recently received Tyler’s diagnosis and started coming out of that deep, dark waiting period that was the hardest, most frustrating, most confusing chapter of my life. Advocating is my healing process because I feel that if I can help prevent other families going through what we went through, that it will mean there was a reason I had to go through it.
3) Not everyone is on Facebook every day. Someone who would like to make a contribution might need that 67th post.
4) When my sister asked for contributions to a walk she was doing last year, I didn’t have the money at the time. When I finally remembered and had money, the Walk had already happened and I was really disappointed that I had dropped the ball and forgotten about it.
5) I read that if you really believe in what you are fundraising for, that it isn’t something you should be embarrassed to do. It is something you are compelled to do. I don’t want to just raise money for the 5k Walk I am doing. I want to start a movement. To make this world a place where people know what autism is and where autistic children are valued by their peers and teachers, and later their coworkers and community. A place where autism doesn’t break a family, but makes it stronger. A place where autism isn’t a disorder but a description. I am left-handed. I do not have left-handed disorder.
So this is why I do what I do. This is why I continue to ask. This is why I risk being unfriended.
Because this is for the ones who cannot ask themselves. For their mothers and fathers and siblings who are fighting to hold it together one more day.
How can I not?
Please consider going to my link below and making a contribution to Autism Speaks if you are feeling an (A) response today.
http://www.walknowforautismspeaks.org/arkansas/rflinchum
Thank you,
Rachel Flinchum
(C) Rachel Flinchum 7/6/2013

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Reaping the Harvest

Growing up as a child, I bounced around a lot when it came to extracurricular activities.  I did a lot of things for one year.  The only thing I ever really stuck with was horseback riding and I never became the blue ribbon winning wonder that I hoped I would be. Consequently, I never really learned anything well enough to master it.

The same thing happened with my majors in school and my jobs after college.  Right now I am in an extremely stressful position as a manager of a clinical laboratory.  We are a start-up company – so not only do I have a high stress job, but the things I do on a weekly basis can change drastically and I am always having to learn new things.

I am a mother of two young children who are like night and day.  Tyler has autism, is extremely organized, and has always been very independent.  Ash is a very social, dramatic, chaos bomb that constantly craves attention.  Raising Tyler for eighteen months before Ash came along gave me very little experience in how to raise Ash, because even as babies they had different needs.

So I realized about half a year ago, as I was trying to sew a bib with perfectly aligned stitches like all of the other bibs on Etsy (another hobby), that I have managed to become extremely accomplished in anything.  I am not an expert on anything.  There is nothing that I do that I feel extremely comfortable in or that I am massively successful in.

I have never found MY niche.

In addition to this, I also know that I set very high standards for myself.  Everything needs to be perfect.  And if it isn’t perfect, it needs to be beautifully and artistically imperfect.  I know I need to give myself a break.  But for some reason I can’t help but feel that if I could find that one thing that I was made to do, that the high standards would be easily achievable.

So naturally, when I started my Tyler’s Train journey I told myself to not set high goals.  That lasted for about 5 seconds after I posted my first comment on Facebook about the Walk Now for Autism Speaks I was doing in October.  I am, in theory, a very reasonable person.  I should not feel like I have failed if I did not reach my lofty goal of $1000 for the Walk within the first 24 hours.  In reality, however, I had felt like I had failed.  Not my friends, who have bills and troubles and journeys of their own…but myself.

You want find out how big my goals became?  Within two weeks I had signed up for a 5K Walk, written a book and published it on Barnes and Noble, started putting items back up for sale on my new Tyler’s Train Etsy store, and then I started this blog.  Why?

Because for the past three years I have experienced more pain, heartache, and confusion than I ever thought imaginable.  Because my son wouldn’t talk, or eat, or let us go to the zoo without us having to carry him out while he screamed over and over.  Because I was terrified to go out in public with the boys because I didn’t think I could handle it if something were to go bad.  Because doctors and insurance companies made it almost impossible to find out what our next step needed to be.  Because with every day that passed, every screaming/word-chanting episode Tyler had, every dead-end that we hit, and every therapy session that we paid for out of pocket, I felt another little part of me slip away until all that was left was survival, anger, and weariness.

Tonight I was painting wood cutouts.  They are my latest project for Tyler’s Train.  I bought them for a dollar, spent about a dollar in paint on them, and then post them on Etsy for $12 with $10 of it going to Autism Speaks if they sell.  My plan was to make them customizable so that people could order the colors they want and I paint them a new one and ship it out.  It is taking forever to paint each one and I haven’t sold any yet.  I have two styles in my store already.  So I began thinking this might be another dead end on my journey.  My book isn’t selling, the only donation I received this week was my own, and my other Etsy items aren’t selling.

AND I WAS OKAY WITH IT!!!  Absolutely no sense of failure. In my Silver Linings post, I wrote about how the mental mindset you get immersed in while advocating for something can change you on the inside.  I think I am beginning to see the effects of this.  I have never really put all of my effort into something that was so personal and so meaningful in my life.  A week ago I do not think I could have been sitting there taking forever to paint a little sun cutout and felt completely at peace that this may or may not work out.

Do I want to make a difference, do I want to be effective?  YES!!!!  But my ego is no longer the main player of this show.  I am doing what I can and I am doing it with love in my heart.  The level of success is not nearly as important as the following things that I was able to pull out of my camera roll on my phone and see in a way that I could not have just a short time ago.

I was able to have a conversation with my son tonight when I took this picture.  At age 3, this would not have been possible and many caregivers of autistic individuals will never have this.

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Even though out trip to the Great War Memorial Balloon Race went badly and we all left pretty quickly (husband was sick, it was super hot, and we saw no hot air balloons), we did get to see this gentle giant and it brought pure joy to the boys faces.

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And finally, even thought I might never be able to sell one of these for my cause and if I don’t know how to spend less than three hours painting it (which is ok if someone wants one!), I can still paint a butterfly.

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And even though work is hard and I have to use a lot of my time off on doctor’s appointments and evaluations (best time I ever spent), I still get up each morning and go every day that I can – which is not something I was good at doing before I became a mother.  I have also met some wonderful people and developed long-term relationships with some people at UAMS.  People I greatly respect and who I suspect are starting to respect me back.

People who I haven’t seen in years are reading my blog and encouraging me.

My husband of 5 years still loves me, accepts my crazy, and is in the trenches with me every day.  And my mother supports me completely, even when I am texting her 10 seconds after I launch a new post or idea and want to know what she thinks (sometimes at 7 AM – sorry mom!).

These things I would have told you that I knew before, but now for the first time in a long time I can celebrate them.  I am no longer just surviving.  I am no longer only angry.  I am no longer the center of my universe.

I do not know what is in store for us tomorrow.  I do not know if Tyler will be potty trained by the time he goes to school, or if he will have friends, or get married one day.  I don’t know if Ash is suffering from the extra attention that Tyler needs.  I don’t know if I can keep holding together all the loose strings at work that I am responsible for.  I don’t know if we will ever be out of credit card debt or be able to afford a bigger house.  I don’t know if I will every feel like I have done enough for autism advocacy.  But I do know that I love my family and I am no longer interested in allowing my ego to dictate how I approach each of these issues.  Will I relapse?  Probably.  But I know how to be different, how to be better and so I will work on getting back to this place every time I need to.

Thank you for reading,

Rachel

(C) Rachel Flinchum 6/30/2013

Silver Linings

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.

With love,

Rachel Flinchum

(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.

www.autismspeaks.org and www.aaroc.org

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