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

My life. My choice.

Lately I have been total blah.  I have been sad and low energy.  It has been difficult for me to do anything.  There are things I want to do, but by the time I go to work and then come home and take care of the boys until I get them into bed, I am too tired.  That is not a new routine, but lately it has taken everything out of me.

On top of that, Ash has been impossible to get to go to sleep.  I lay with him forever and then as soon as I leave the room, I hear him getting up.  If I let him stay out of his bed long enough there will be a “Roar!” coming from the room.  I go in and his is sitting on top of a sleeping Tyler and roaring at him like a dinosaur.  Funny and not funny at the same time.

Tyler has always been a rule follower.  He is very compulsive about a lot of his behaviors, but once he accepts a rule he will stick with it.  Ash is an impulse-following, chaos-bomb ready to go off at any time.  Any time.

I realized last night that I needed to give Ash and Tyler more time.  Different time.  They are getting older and so things/routines/interactions needed to change even more.

The Walk Now for Autism Speaks event is in three weeks and it feels further away than it did three months ago.  It has just gotten so hard to do anything.

I worry that I finally have chronic fatigue syndrome or something else that is going undiagnosed.

But I have also come to an important conclusion.  I am not choosing to let my autism advocacy motivate me right now.  It got hard.  I got tired.  The walk fund stopped growing.  I should say that it got harder.  It has always been hard.  But then it got harder and harder.  And I let myself stop being thrilled by it.  I stopped being fed by it.  I stopped remembering that by giving myself to it, I allowed myself to get something back.

So now I am going home to work on my stuff for the vendor fair I am in on Saturday.  All proceeds go to Autism Speaks.  I am choosing to be motivated by this tonight.  My life.  My choice.

Three more weeks until the Walk, but the Walk is one chapter of my journey with autism and autism awareness.  Do you want to do something?  Check out my Walk Fund at www.walknowforautismspeaks.org/arkansas/rflinchum to see what this amazing event is all about.  Even just navigating the website will help with awareness and would mean a great deal to me.

From my heart,

Rachel

(c) Rachel Flinchum

Uncharismatic Me

My whole life I have liked making money.  I liked it as a kid doing extra chores.  I liked it as a college student so I could help pay my living expenses.

Making money means I get to make choices.  I get to decide what I am going to do with that money.  Sometimes I spend it, sometimes I save it, sometimes I give it away.  My choice.

Getting married and having kids has thrown a wrench into my perfect money decision process.  I am no longer the sole authority on how the money is spent and I will admit, it is a difficult pill for me to swallow.  Very difficult.

But on the whole, a lot of my time as an adult as been based on decisions that allowed me to either continue to bring in a paycheck or to improve the numbers on the paycheck.  I never meant for them to, but things kept popping up that needed money and I needed to be able to provide money.  My husband is in the same boat.  He works long hours and has made sacrifices to bring home a bigger paycheck.

So it is very strange and very liberating to be fundraising for autism.  I am working my little tail off to help Autism Speaks get donations.  I don’t have to decide what is done with the money.  They have that all figured out already.  I don’t have to feel guilty about how it is managed, because I never even see it or lay hands on it.

I always thought fundraising was something given by people and that the person asking for it was just a money hand-exchanger.  The truth is that I am really working for this.  I put in hours and effort and creativity and heart and body into this.  I am working hard.  And all of my rewards go to Autism Speaks.

I am just now understanding that volunteers are people who work but ask you to pay someone else instead of them.  That is huge.  I volunteered in my younger years, but it was always a one-night thing or a weekend thing or a fun thing.  Yes, this is fun and yes there are one-night events, but I am doing this and thinking about this and planning this every day.

I wish I was better at it.  I wish I was one of those charismatic people who have lots of friends and can walk into a room and people are falling over themselves to get on board.  The truth is that I have no friends.  I am shy and awkward and come off as standoffish because I am so shy.  I don’t know how to motivate people.  I am a loner.

So doing this whole autism advocacy thing is a HUGE leap into a new world for me.  This is not something I am good at or that comes easily for me.  I am making mistakes and have definitely been hurt a few times.

I am learning a lot of things.  I wish I could say I was learning how to advocate better, but what I am learning usually has nothing to do with that.  I am learning more about autism and how it fits into my life, Tyler’s life, and our family’s life.  I am learning how important it is to listen to people and see what is important to them.  I am learning how to give some of my money away again.  I am learning how to talk about things.  I am learning how to put the different parts of my life into perspective.  I am learning how to work really hard for something without being selfish about the rewards.  I am learning the joy of a sacrifice freely given.  When I receive a donation on my walk page or a purchase of my baby items that will go towards the Walk, I feel successful in a way that I don’t feel when I see a paycheck deposited into my bank account.

I am trying to do as much as I can to help autism awareness, but it is really doing more good for me than I am doing for it.  Maybe it is reshaping me into something that can be useful.  God knows I am not loaded up with useful the past few years.

I never thought that being a mother would bring me down this road.  That it would change so much of me.  I am glad that it has, because I desperately needed saving.

From my heart,

Rachel

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(c) Rachel Flinchum 9/10/2013

Okay. Let’s do that.

So about a week ago, I noticed I was entering Sadness on the Grief Cycle. I had no idea how much this would affect all the different aspects of my life. Before I could write 10,000 words a day. I could barely wait a day before blogging again. I was sewing and painting. I never wanted to sit down and read a book because I had too much stuff to do. I was getting settled into my exercise routine to prepare for the upcoming 5K for Autism Speaks.

Now…now I am so ridiculously unmotivated it is frightening. The lingering sadness I am experiencing is coloring everything I do. Even brushing my teeth seems futile. They are just going to be dirty the next time I eat something. Sigh.

Sometimes it is my mood, but more often it is just the lens through which I see everything. I am still happy about a lot of things. Tyler is doing really well in school so far. We just ordered our Team Ty-Ty t-shirts. The Walk Now for Autism Speaks is only a little more than a month away. I am doing a Vendor Show in three weeks which will hopefully raise more money for the Walk and help me sell some of my horde of made baby items.

But everything seems a little less colorful…a little washed out.

Especially my creativity. I open a New Post screen on my computer and just stare at the blank box. Nothing comes. I will sew for a few minutes and then just wander away from the sewing machine.

I look at my Walk Now for Autism Speaks Walk Fund, which isn’t growing anymore, and instead of brainstorming new ideas, I just get discouraged and close the app. And it is stupid that I am discouraged because I have exceeded my goal for the year and I am really proud of myself and the people who have supported me. But then I think about all the families struggling with non-verbal children and bullying (the parents get bullied too) and it just makes me sad.

The ONLY reason I even know I am on this repeating grief cycle is because I have read books on autism and families dealing with it. How many other parents are out there that are going through what I am going through right now, but they don’t understand why? You know, when I am talking about autism awareness and trying to raise support for it, I am not only picturing beautiful, gifted children who need our help. I am picturing the mothers as well. The ones who are confused, angry, sad, and broken. The ones going through what I have had to go through and am still going through. I can look into the eyes of a mother of an autistic child and see many things that I wish I could take away. There is pride, love, and fierceness, but there is also brokenness, betrayal felt, and exhaustion.

How can we keep the good things of this experience but remove the bad? Tyler is AMAZING. He is loving and kind and honest. Having Tyler as my son is a blessing and I love every part of him. Even his autism. I would have been devastated if my parents had tried to force me to be right-handed. I have no intention of curing or “fixing” Tyler’s autism. He is unique and we need his perspective and contributions. But raising him to function in our world should not be a traumatizing event. So he needs to do things differently or needs extra help. Okay. Let’s do that. I shouldn’t have to fight for it. I shouldn’t have to bleed for it. I shouldn’t have to be broken in the process.

I wish mothers lived in a world where their child, whoever they are, are accepted as who they are. Do they need time with a professional therapist to learn to talk? Okay. Let’s do that. Do they need to have a place they can go to when things overload? Okay. Let’s do that. Do they need to get a service dog to keep them from wandering off and hurting themselves? Okay. Let’s do that.

Why isn’t that the answer more often. Okay. Let’s do that. We need a Let’s do that World.

I need to get out of my sadness funk. Of course, that will just land me in another category. Sadness can be good. I usually use the time I am stuck here to put things into perspective. I build up some inner reserves and just let myself be still for awhile. Life doesn’t slow down though and right now Sadness is not working in my favor.

So time to move on to another Grief category. Okay. Let’s do that.

For more on the Grief Cycle categories and other information I have picked up along my journey, check out my book.

From my heart,

Rachel

(c) Rachel Flinchum 8/30/2013

Beauty That Will Change You

On Sunday, our family went to a car club gathering. I did a bad job of prepping Tyler. We were going to a park that had a lot of playgrounds, so I told Tyler about the playgrounds.

When we met up with everyone there wasn’t a playground in sight. Tyler became really upset. I had to hold him while he cried and Ash walked around in the trees.

Everyone felt bad and we moved to an area with playgrounds.

Then there were two playgrounds. One was for kids 5 and older. Of course Tyler wanted to play on that one. But it was too dangerous for him and Ash, so I made them go to the smaller one.

Tyler had a lot of reasons why this was not a good playground. He tried saying there were too many kids and then not enough kids. He tried claiming there were too many rocks. My favorite excuse was that playing on it would make him tired.

Eventually he started playing. And then he was upset when it was time to leave to go to dinner.

At the restaurant he was inconsolable. He wouldn’t stop crying. There he said the restaurant smelled and was hot.

We normally don’t take him to restaurants unless they are fast food places with playgrounds. Tyler doesn’t eat much and he won’t eat out. So the thought of him sitting there while everyone else eats is a little laughable.

I ate quickly and Tyler, Ash, and I ended up sitting in the car while everyone else finished their meals.

These were all my husband’s friends. I didn’t talk to any of them because I was interacting with Tyler the whole time. But even though I felt disconnected with everyone there, I got the sense that everyone felt bad that Tyler was having such a hard time but that no one was angry at us because of his behavior.

I can get very defensive of Tyler, but my defensive side wasn’t necessary. It was a blessing in the midst of a very difficult time for me.

It reinforces the idea that people are capable of great good and that my dream of a world that holds autistic children in great value can exist.

I hope that one day having an autistic child won’t put parents into a grief cycle. That it can be seen as a blessing and not a tragedy.

We are all born as uncut diamonds. Autistic children are the same. Their inner beauty is locked more tightly away than most. But if given the right tools, they are diamonds with phenomenal clarity and beauty.

It takes someone who knows how to shape the stone. Someone who knows what to remove and what to keep. It takes parents but also teachers and doctors and therapists and siblings and friends all lending their own efforts.

It is a lot of work and many times you are holding your breath because you don’t know the next step and these stones are hard to visualize. these stones can’t be cut in the normal way. They are made differently in their very core, but if you learn to let the stone shine the way it was meant to, it will be the most beautiful sight you have ever seen.

Beauty that you cannot hold in your hands without being changed. Beauty that makes you more beautiful as well.

You will cut your hands and bleed. You will lose some of yourself in the process because it will take that much of you. But what you get back will be better.

To support these beautiful diamonds, please consider going to http://www.walknowforautismspeaks.org/arkansas/rflinchum to help me raise awareness and funds for families struggling to reveal their child’s beauty.

Become an advocate for children. Become a supporter of overcoming hardship and of being different…not less.

From my heart,
Rachel

(C) Rachel Flinchum 8/27/2013

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I Will See You

Runnings errands with two small children is no easy feat. When Ash was a baby it was easier. He stayed in the carseat the whole time, even inside the store.

Once two mobile entities come into play, it gets harder. They do not bolt in the same direction.

Add Tyler’s autism into the mix and going out alone with them becomes a mythological trial of Hercules.

So for a long time I was trapped at home with the boys. Need groceries…gonna have to wait for the hubs to get home from work. Bored…get used to it. See Facebook pictures of families at pools or at restaurants…how alien and strange.

Recently I decided I was getting out of the house again. Fast food places with playgrounds and pet stores are frequent haunts for us.

If I am either super brave or super desperate, like today, we go to the grocery store and pray one of those special car carts are available. It seats two in the car part.

As we were leaving I was politely trying to explain to the cashier that I couldn’t listen to all the instructions for surveys and double points on gas because the boys were more than ready to go.

I look over at Ash and he is bolting for the front door. I call him to no avail, so I go straight into a run and catch him as he is leaving the store right into the busy parking lot. I was terrified. I barely caught him in time.

I go back for Tyler and the groceries and the whole store watches as I struggle out of the store with two small children and a cart that won’t turn.

I was angry everyone watched. I was angry no one offered to help. I was angry the cashier thought it would be a good idea to give me a five minute long speech when I was obviously struggling to control two small children.

As I got into my seat and started my car. A lady with a baby had walked up to the car next to ours. When my engine started, she looked over her shoulder and gave me a really nasty look.

A look I recognized.

So I waited until her baby was secure in her carseat and the lady had moved to the back of the car to unload her groceries. Even though there had been plenty of room for me to leave before then.

But even though it has been four years, and my current grocery store hurdles look very different, I still remember going with just the one baby. At the time, that wasn’t easy.

I almost didn’t even notice her. Our lives are so hectic and filled with struggles, that seeing moments that we can respond to is really hard.

It was so easy to wait for this lady to safely secure her baby girl before pulling away. How many of these moments am I blind to?

I read a Facebook post about the importance of caring about your community and country. Investing and sacrificing for your neighbors can turn a broken place into one of growth and strength.

That is what I want my autism advocacy to do. We have no grants we have applied for. We have not asked for any assistance or free services. I am not raising money and support for Tyler.

I am doing it for our community and our children. No family should have to raise a special needs child without professional guidance. No family should be broken by this. No child should feel broken. No community can be strong without understanding its children and the needs of their neighbors. No person is whole unless they understand the people around them.

People don’t understand autism. They don’t understand Spina Bifida. They don’t understand Down Syndrome. We see children with cancer and birth defects and disorders and we see an object of sympathy. We don’t see people. We don’t see a forming adult. We don’t see their potential…just their ticking clock.

I do it. I see a clock and a broken family. I am wrong.

I dream of a better world and of a stronger community. A proud community. And that community is one where you can take your baby and your kids out of your house and into that community.

One hard to see moment at a time is what it is going to take. I commit to opening my eyes. Will you do this with me?

From my heart,
Rachel

http://www.walknowforautismspeaks.org/arkansas/rflinchum for another hard to see moment

(C) Rachel Flinchum 8/24/2013

Thank You to Homer Adtkins Elementary School

Tyler started Pre-K this week.

I did not receive any frantic calls from the school. I did not receive any angry calls from the school.

What I have received is the support from caring teachers. Teachers willing to work with his issues. Teachers willing to change his pull-ups. Teachers buying him special quiet time toys. Teachers helping me figure out his food issues.

What an amazing, amazing blessing.

Today is just the third day. A teacher walked by while I was talking to the principal about Tyler’s food and gave him his name tag without me having to tell her Tyler’s name.

After walking so long in the deep and dark places, I find myself in a fragrant field.

I have to pause. The beauty of it is overwhelming. Would I have noticed it without having come upon it from the dark?

Thank you, Homer Adkins Elementary School in Jacksonville, AR.

You have no idea how much you are helping my family and my child.

This is a new chapter with new players. People who choose to care. An answered prayer so long whispered in the dark. A new belief born and a dying one revived.

From my heart,
Rachel

(C) Rachel Flinchum 8/21/2013

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First Day of School

Tyler is starting school on Monday. Today is the day that it finally really hits me. No longer is this an occurrence that will happen in the future or near future. It is here. Parents have a lot of worries about their kids going into school.

Tyler is not potty-trained yet. There will be times he will need to go to a quiet place to come down from an overload. We are going to have to pay the school for every breakfast and lunch because what Tyler will eat does not qualify for an acceptable brought meal. The list of requirements for his meals is a portion size specific list that has protein, vegetables, fruit, carbohydrates, and dairy. Tyler won’t eat protein, vegetables, or fruit. He can become sick if he consumes too much dairy. So instead of sending him off to school with the food he will eat, we are going to buy him school meals. I am hoping that watching the other children eat these foods will motivate him to give them a try, but this is something no one has been able to make any progress in so far. His parents, his grandparents (both sets), and his therapists have never been able to get him to broaden his range of edible foods. I have always been a very picky eater and as I grew I accepted more and more foods into my diet. Improvements will come, but they will come on Tyler’s schedule.

I am nervous about Tyler’s teacher finding out that he is still in diapers, but this is an important time for me to remember not to allow expectations (good and bad) to dictate the outcome of a situation. It is what it is and that is all there is to it.

I am actually sad that there is no list of cute crayons and notebooks that I need to buy. I know these lists will come soon and then I will be mortified with the cost, but I enjoy buying things like crayons. Thinking about all of the crafts and letter learning he is going to do is very exciting to me. This is the beginning of a new chapter in Tyler’s life. He will meet new kids of his own age and be able to play with them. His therapists are at the school and can do his therapy while he is there.

This really is an amazing opportunity for him. He is going to be in a 4-year-old program so he is starting a year early. This is going to give him a huge advantage.

I am going to bawl like a baby after I have dropped him off Monday morning.

Good luck, my sweet little guy! I love you! Keep trying, you can do this! You are my strong, brave little man!

From my heart,

Rachel

In a mere 7 weeks, our family and friends are participating in the Arkansas Walk Now for Autism Speaks to raise support for Autism Speaks. We would love to have your support for this great cause. The website for my Walk Page is http://www.walknowforautismspeaks.org/arkansas/rflinchum. Go to the main page and search for Team Ty-ty to learn more about our team and to join us!

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(c) Rachel Flinchum 8/15/2013

 

Going Live

I have messaged with the Autism Speaks crew but I have never met any of them face to face.
Tomorrow I will.
There is a small fundraising dinner I am going to. There is another one on Saturday that is the Walk Kickoff.
And even though I am a 33-year-old professional woman, I am a little nervous.
I am much better on paper than in person. I am a writer. Mingling with people is not something that comes naturally to me.
But if I am going to continue to advocate, I need to work with the people who are doing the same thing.
These are the people who are out there every day, helping to make this a better world for Tyler.
These are my new “cool kids” and naturally I am nervous about them liking me.
It seems silly, but it is what is on my mind tonight.
I am starting a new and exciting chapter of my life and I wonder about the people who will be stars in the show.
One very good sign is that all of these gatherings are at pizza joints. Yes, a very good and yummy sign…

From my heart,
Rachel

(C) Rachel Flinchum 8/13/2013

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Short and Raw and then Something New

Lining Up Cars

I see them every day

The cars all lined up

Red with red

Blue with blue

I hear no car sounds

No wheels moving along

They are lined up

As if life is parked

Not moving

Just lined up

Locked up

Within the boundaries of order

Within the boundaries of color

Within the boundaries of autism

 

Lining Up Cars

I see them every day

The cars all lined up

Red with red

Blue with blue

The canvas my son sees

He uses cars to paint

His fingers are his brushes

So perfect, he lines them

He sees what I do not

I see cars

He sees more

Outside the boundaries of names

Outside the boundaries of accepted

Outside the boundaries of my limitations

This is a sneak peek of a poem in the book I am currently writing.  The poems are meant to be read side-by-side, but I couldn’t get that to view correctly on my phone app.  I have a previous ebook on Barnes and Noble called Tyler’s Train: A Mother’s Journey to Improve the Lives of Autistic Children.  It is a shorter book that has some things that have helped me get to where I was when I started the journey of advocating for autism.  It has some insights and tools that I have used that have helped me a lot with Tyler and it also has a lot about being a mother discovering that her child has autism.

My new book is more about figuring out life.  My introduction is currently:

When you put a frog in boiling water, she will jump out.  When you place her in room temperature water and slowly heat it, she will never jump out.

We are ready for the boiling moments in life.  When something drastically changes and we cannot help but notice and react.

What we are seldom ready for are the moments when we look around and realize we have been in boiling water for a long time, but everything changed so slowly, so subtlety, that we were in trouble long before we ever realized it.

Everything around us makes us believe that we have to not only succeed, but blast through success with pose, generosity of spirit, the ability to make time appear out of nowhere, good health, and beautiful table settings.

So when these magical personality traits don’t manifest themselves, we pretend.  We fake it till we make it, right?

Then one day you wake up and realize that you might need to be taking your situation a little more seriously.  You realize your life’s tray is so full that something is going to fall and crash to the ground.  And then you realize that the something just might be you.

You are a frog in boiling water.  Welcome, my friend!

I had that moment.  I have a marriage, two young sons (one with autism), a demanding job, not a young body, and plenty of personality issues myself.  My days alternate between getting a ridiculously huge amount of stuff done and getting nothing done.  I could not tell you the last time I said, “Wow, I had a good day today.”

So I decided I needed to do some purging.  But I couldn’t figure out what to purge.  I had already been responding to the small increases in temperature in my life by letting go of things I couldn’t handle anymore.

I started to blog.  It is hard for me to get my thoughts out of my head and blogging helps me to process all of my stuck thoughts.  Through my blog I started to slowly discover that what I needed to purge was myself.  I needed to unlearn a lot of bad habits that involved how I thought about and responded to life.

We cannot all live in peaceful homes in beautiful places.  We cannot all spend our days tinkering with the hobbies we daydream about.  But I can learn to see the beauty in my life.  The life that I live, and the life that only I can live.  I am tired of dreaming of tomorrow.  I want to live today.

But how?

I would love to hear any ideas of what might be good to include in the book.  Anything that is left unanswered for you so far about people raising special needs children.  I would also love to have you check out my first novel.  I wrote it to help others through my own life lessons.  It is short and a bit raw, but at the time I was a bit short and raw too.  I think it is a good fit for someone leaving a dark place for a better place.

From my heart,

Rachel

(c) Rachel Flinchum 8/12/2013