You Are the Expert On Your Children

I have heard many stories of people who are told by their doctor or therapist that their special needs child will never talk or never be able to go to school or never achieve some of the many things we long, and assumed would be a given, for our children. Many of these stories end with the child overcoming the odds and accomplishing something that was not supposed to be possible for them.

I broke my arm about seven years ago. The fracture was right in my elbow joint. After going through physical therapy, I returned to the specialist. He asked me to straighten my arm as much as I could. I had about a 130 degree flexibility. It wasn’t a comfortable feeling, because my arm had nothing to keep it from being jerked and it was very painful. Then he said, “This is the best you will be able to straighten your arm for the rest of your life.” Like many others with this injury, I now had scar tissue in the joint blocking further movement. I left the doctor’s office, got in my car to go back to work, and bawled. By the time I got to work I had come to an important decision. Screw what the doctor said…I was getting my arm back. I spent the next year continuing my physical therapy at home. My arm kept me awake every night from the pain. By the end of the year, I could straighten my arm completely. It still hurts if I use it too much or if the weather changes too fast. It still gets stuck in the scar tissue and its very painful to work it back out again. But I overcame the odds and got back a function of my body I had been told was lost to me.

Doctors and therapists do not see your child every day. When they do see them, it is in a less familiar and more stressful environment. They will never know your child like you do. They have never seen your child’s autism before because each case of autism is unique. All they can do is make an educated guess of what your child can and cannot do based on limited exposure and previous children’s results.

They are trying to help you come to terms with having a special needs child. It is not your fault if your child has limitations and hurdles that other children do not. This is very true.

However, they do not have a magic formula. They are not more knowledgeable about your child than you are. You are the expert here.

The information they provide is essential to you so you can understand your child, how they should and shouldn’t thrive, and what obstacles they are facing.

It is not meant to put you or your child in a box. If you are told your child will never talk, prove it. Don’t give up on communicating. You will never know if this is true about your child if you don’t actually try. Maybe they never talk, or can only sing, or sign, or type. But unless you go on this journey without limiting what could happen, you might walk right past the key without seeing it.

If it is true, you will know you did everything you could. Therapists and doctors can fix parts of the body to make accomplishments easier, but you know his body, mind, heart, and soul. That is a lot more to work from and all those things used in harmony see the greatest results.

Your child, just like everyone, will have limits. Boundaries that come with their unique person. We are not all capable of the same accomplishments and everything is a gradient, a comparison to those around us.

Please do not let someone else tell you what your child’s boundaries are. It is our job, as a parent, to start them on the path of life – the journey they will go on to learn about themselves, their boundaries, their obstacles and how to claim victory over them. Just as you are on the same journey that your parents set you on.

What I am today is not the equivalent of what I can be tomorrow.

I am not static. I grow.

I cannot know I cannot do something until I try…multiple times.

I will not let another limit me.

I will try things a new way, my way.

I will seek to find a better way.

I will have good days. I will have bad days. That is life.

From my heart,
Rachel

(C) Rachel Flinchum 7/28/2013

No socks, walking in water!

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The Voices of Autism

Symbolism: Puzzle Piece Rainbow Primary Colors Light Blue Dragonfly Butterfly Light Bulb Missing Piece

Main focus: Insurance Coverage, School Programs, Community Enlightenment, Military Coverage, Anti-Bullying, Early intervention, Ethnic/Racial Equality in Early Intervention, Celebrating Autism, Mourning Autism, Fighting Autism, Fighting for Autism, Petitions against Pop Culture Slurs of Autism, Articles Supporting Pop Culture Supporting Autism, More Therapy, More New Therapy, More Drugs, Less Drugs, Lets Work Together, Kiss my Ass

This is not an inclusive list of everything I see in a day involving autism. We are talking email and Facebook only.

Autism Awareness is a grassroots society. We are not specialists or authority figures. Yes, we have some of those. But the ones you will probably know are not. This cause has been taken up by mothers, father, siblings, other family members/friends, and autistic individuals themselves. We were placed into a situation that we knew nothing about. When we went to our doctors, they just shrugged and handed us some printouts. We googled like maniacs and found little help. We were put on waiting lists and told lots of confusing and contradictory things about what we should be doing. Each of us forged our own trail anew. We crawled down into the muddy trenches with only our soon-to-be-disillusioned dreams of the way the world is and our postpartum unfit bodies. When we crawled out on the other side, muddied, bleeding, and broken, we looked up at the sun we haven’t seen in so long and said, “Something needs to be done about this.”

So begins a journey. A journey to try to raise awareness, support, and aid for families dealing with autism. But we are doing it at 10:15 at night, or during our children’s nap time, or in between laundry, or on our lunch breaks at work. Again, we are each forging our own trail anew.

We try to reach out to autism organizations, but they are run by volunteers that are also dealing with autism in their lives and only have time to email while sitting in waiting rooms at therapy facilities. Coordinators are available from 9 am – 1 pm and not at 6 pm when you get home from work and your child is screaming about the different way you drove home because of a car accident.

So one of us chooses a puzzle piece, and another chooses a light bulb. We advocate for curing autism and for not curing autism. We want more drugs, we want less drugs. We are a huge composite of people who all want what is best for their child. And because autism is so varied, there is not one common goal or vision or best option. Having autism is like being a boy versus being a girl. We cannot have a world that is so streamlined for boys that girls cannot fit or flourish. How many people have to be included before it is no longer acceptable for those people to be excluded from society because of their differences? 1 in 54, 1 in 100, 1 in 1,000,000. 1 in 54 boys in the US are being diagnosed with autism. What does that mean? That 1 in 54 boys are disabled? That 1 in 54 boys are unfit for society? That 1 in 54 boys can be ignored by insurance companies?

Where does the fault lie? Time and time again, society has proven that it is capable of rising above the current situation and doing the right thing. People care about the underdog. They want to show all people they are accepted and are worthy of extra measures to ensure that they have every possible chance. This is not society’s fault. If the general population does not rally behind autism awareness and support, it is because they are not being given the reason to.

I am trying. I am REALLY trying to do what is right by autism awareness and I keep hitting brick walls and am constantly confused about which direction I should be going. Are we trying to get therapy paid for or are we trying to get more support for families who have to stay home instead of work? Are we telling people this is a disorder, a disability, or a gift? What the hell am I doing? And why can’t I find an autism website that is either easy to navigate or that has been updated in the last six months?

I am standing on the front lines saying, “Come on! Let’s do this!” Everyone around me says, “Ok, how?” “I don’t know! But let’s just start running and it will all work out!” People look around and shrug. “Do you know which way we are supposed to run?” “No! Just everybody pick a direction and go!” Nobody moves. Why should they? Going into battle without a plan is never a good idea. (Unless you are Chuck Norris. He always has a plan though.)

Our own difficult circumstances with autism are our biggest enemy. This is not an army, but a million untrained individuals.

How will this end? What will happen to our children? What will happen to the broken mothers standing alone on the battlefield? I don’t know anymore.

I know how to turn and face the lions for my children.
I know how to get up each day and know that today I will not give up.
I know how to admit that I don’t know what I am doing.
I don’t know how to show you autism in a way that will inspire you.
I know that my son really needs me to do just that.
I know my son will never be alone as I was alone.
But will others?
What are the names of the children with autism who slip through the cracks?
Growing up without ever having a seat in the lunch room?
Sitting in a crowded room and having no one excited to see them there?
Realizing their child has autism and having no world outside their home to reach out to because that world judged you unfit years ago?
We will never learn their names. They are the silent ones. The ones who know deep inside they are a bird in a world of fish. The ones who scream on the inside.

If I leave nothing else behind, it will be this: my sons’s names are Tyler and Asher. And their mother and father love them and are proud of them and wouldn’t change a thing about them.
I would do anything for them. I would change the world for Tyler so that his autism doesn’t represent a wall between him and everyone else.

But advocates of autism, we have really got to get our shit together.

From my heart,

Rachel

I will be walking for autism this October. My fundraising page is

http://www.walknowforautismspeaks.org/arkansas/rflinchum

(c) Rachel Flinchum 7/23/2013

The Rarity and Necessity of Success

Today I juggled a huge work audit and phone calls with Tyler’s therapists. We finally received the report in the mail stating a diagnosis of autism.
Here is what I thought would happen:
1) Tyler’s therapy hours would be increased
2) The facility would know exactly how to update the claims they submitted to our insurance company so more therapy would be covered as opposed to us paying out of pocket
3) Back-billing previously unpaid claims would be automatically initiated for the past year

Here is what happened:
1) Even though therapy place is not qualified to provide autism diagnoses, they only really recognize their own evaluations – so they were willing to look at our report but couldn’t really use it
2) Informed us we needed to figure out our billing with the insurance company ourselves (because why should their billing experts know what to do, right?)
3) Told me that even though they are not making any progress in speech therapy, they would not increase his time unless they felt they could be effective in the 45 minutes they are seeing him a week right now for it.

I was really hoping for more but knew this might be the result. Tomorrow I get to juggle Day 2 of the big audit and contact the school district. Cross your fingers!

Despite all of these setbacks, nothing really prepared me for the call with his Speech therapist. First, she couldn’t remember how often she saw him a week and spent the entire conversation saying two 45 minute sessions a week was sufficient, but then remembered she only saw him for one 45 minute session but this was also sufficient. Secondly, she did not know any of his history for past therapy sessions or the history of his physical tongue attachment that makes it difficult to move his tongue. All of this is in his file, but there I sat on the phone, in front of my boss, explaining all of this again. Then I had to teach her about autism. About Tyler’s sensory problems that mean he won’t look in the mirror or allow other people to touch his face so therapy is more difficult. He doesn’t respond to a reward system because he has trouble with cause and effect. And she is using primarily audio cues for therapy. Tyler, as an autistic child, needs visual cues with audio being minimized.

The hardest thing to hear was her assumption that I am with Tyler all of the time. Those words are very hard to hear for a working mother. I am with Tyler for 45 minutes before work, at night, and on the weekends. Every day I daydream about taking a couple of months off work to work one-on-one with Tyler to get him potty-trained and work on his speech and to just love him. Unfortunately, I also have a mortgage, car payments, and bills to pay.

There I am, sitting next to my boss, having spent massive time on the phone, and didn’t really accomplish anything other than to be reminded that I failed at getting more help for Tyler and at being able to spend more time helping him be the best Tyler he can be.

You want to know why so many children are diagnosed for autism until a later age? This is why!!!

To even get our primary care physician to acknowledge our concerns, we had to switch doctors. Then we spent years on the phone with doctors, therapists, and our insurance company before we even got in for the appointment. This time was spent getting non-medical evaluations, surgery on Tyler’s tongue, minimal therapy, bills not paid by insurance, digging through billing codes, and being told that no one had answers to any of our questions.

To have a child with autism means you will become an advocator because that is the only way to receive any help. It is sad and really pathetic. When you look at how well so many autistic children respond to early intervention therapy, you would think that help would be accessible.

It is not. You literally have to fight and scratch and claw your way to crack the door. You learn to be a fighter. You learn how to beg. You learn how to get knocked face down in the mud, pick yourself back up again, and get right back into the fray. You rarely succeed, but you cannot afford to fail.

I did not get in trouble with my boss today, even though my performance was subpar. I am one of the lucky few. A lot of moms get this far in the game and realize they can only be a full-time worker or a full-time mother. They cannot successfully do both with an autistic child.

Do you lose your income and ability to pay your mortgage? Or do you condemn your child to stay locked away in their mind with a body they can’t use?

When you are able to work, for now at least, do you only take from an already anemic disability program or do you try to put something back in as well?

Help me put something back in. For Tyler, for your neighbors, for the undiagnosed children and the broken families. Please consider a contribution to my Walk Now For Autism Speaks 5K Walk Fund. 100% of donations go directly to Autism Speaks.
http://www.walknowforautismspeaks.org/arkansas/rflinchum

From my heart,
Rachel
(C) Rachel Flinchum 7/8/2013

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The Puzzle in Pieces

A picture says a thousand words, but the artist sees millions of words.  Painting and Image (c) Rachel Flinchum 7/5/2013

A picture says a thousand words, but the artist sees millions of words. Painting and Image (c) Rachel Flinchum 7/5/2013

I recently wrote about how I was having trouble fitting in with the autism advocacy agenda. I see a lot of target phrases and images that don’t really mean anything to me. One of the reasons is that I am learning that I am probably an undiagnosed high-functioning autistic adult…one of many that slipped through the cracks during a time when autism was a silent entity among us. So for me, this issue is very deep and complicated. It is hard to sum it up in to a sentence or an image or a single idea.

But an even bigger reason I have discovered is because every autistic individual is different. And every experience with autism is different. You could enter 10 rooms in a day. In each room was an autistic individual that you spend an hour with. By the end of the week, you could honestly say that every experience you had was completely different than the rest.

There are many common symptoms of the autism spectrum disorder. Difficulty with sensory processing (touch, taste, smell, hearing, and/or sight are all turned up), expressive behavior (emotions, language, thoughts being trapped inside your head), social skills (not being able to read body language and tonal expressions so that you know if you are making someone uncomfortable or if they are being sarcastic), and communication (similar to expressive behavior…you know what you want to say but your body doesn’t know how to make the words a reality).

These are just a few of the big indicators that professionals look for when assessing an individual for autism. But they are BIG categories. Imagine the differences you would see in just a change in sensory processing. How different would a child who has hypersensitivity to hearing be from a child who has hypersensitivity to touch?

This is why no one understands autism. Even people who have been learning about autism their whole life cannot tell you that they know everything about autism. Doctors who treat autistic individuals for years can have a new patient walk in the door every day and see a completely different scenario than they have ever seen before.

This is also why I think that autism advocacy is having so much trouble. Every child that goes to an average sized school in this country will be in a school with autistic children. These are the children who your children will come home and ask about.

Yesterday was the 4th of July and it made me think about the freedoms I enjoy by being a United States citizen. This also made me think about how proud I was that all races, religions, and sexes have won their rights under our flag. This has been on my mind a lot lately because I think we fell short of our goal for disability rights. In the past two weeks, I have seen several cases of people in the workplace being treated poorly because of a medical work restriction. A few years ago, I hurt my back, had to go on work restrictions, and was treated horribly by my boss and coworkers.

I also saw that there was a study done by the University of Colorado that said for the first time in decades, federal spending for disabilities is on the decline. Right now if you have a disability that is concrete and visible and clearly understandable, people have been taught that it is important to be compassionate and believe in your right to be treated fairly and respectfully. This is a wonderful thing that our country has done. We did, however, drop the ball. When it came to the hard to look at and the socially awkward, we turned our heads, because no one wants to fight for someone who does not inspire positive emotions in us when we come into contact with them.

So where does that leave us, the mothers and fathers and caregivers and family members and doctors and friends and people living with autism? It leaves us with a very unpopular cause that has millions of perspectives instead of a single vision. It means instead of being able to only focus on being Tyler’s mother, I have to spend a serious amount of time fighting for insurance coverage, finding facilities that will see him, knowing that instead of fighting for the best teacher in the school I will be fighting to keep him in school, advocating for a cause that no one knows anything about, swallowing my pride every time someone thinks Tyler’s problems are the result of bad parenting, holding him for hours because the park was too stimulating, and going to the store in the middle of the night because it is summertime hot and Tyler will only drink one kind of drink and we accidentally ran out.

Do you know what it is like to be so uncomfortable when someone looks into your eyes that it can physically hurt? To not realize someone is making fun of you in front of other people until everyone starts laughing? To want to play with the other kids, but to not know how to? To stand in a room and realize that you are, in fact, invisible? To walk into a crowded restaurant and to have the noise and the movement become so overwhelming that you start to sweat, your heart starts to race, you cannot think, and you only want to run? To go through your entire high school experience and never have someone save you a seat in the lunch room?

This is a person who sees a part of the world that you will never see if they don’t show you. This is a person who could be your best friend. This is a person who needs help where little help is found.

The painting at the top of this blog is something I made today. I was thinking of my The Bird and the Fish story when I painted it. I have spent days planning it and trying to come up with what I was going to call it. Every time I came up with something, it was a paragraph in length. The point of the painting is that if the bird became a fish to be with the other fish, he would lose the forest. If Tyler were to wake up tomorrow without autism, he would lose what he has gained by having autism. He would feel less. He would see less. He would not be held captive by his boundaries, but he wouldn’t excel while within them. He would not be Tyler.

There is a saying that I hear a lot in the autism advocacy world. “Different…Not Less.” I didn’t get that until today when I finished my painting and realized that those three words held the point I was trying to make. Do they say everything? No. But now I understand them and when I see them in my mind, I see the image of what the bird would both gain and lose by becoming a fish.

I don’t want Tyler to become a fish, but I do want what all mothers want. I want him to be happy. I want him to succeed in life. I want him to love and be loved. I want him to feel a part of something. I do NOT want him to feel alone, as I have felt for almost all of my life. But I don’t just want this for my son. I want it for all adults and children living with autism. I never want anyone to feel alone, to feel trapped, to feel unwanted. I also want to be able to express to the world a unified front for autism advocacy, because until that happens, we are just millions of voices clamoring for your attention instead of a single voice of authority that the world can see and understand.

Until that time comes, I am just one of those many voices. Not even a very loud voice at this point. But I am doing what I can and I am following my heart. This may not be a cause that inspires the masses, but if in any way, anything that I have said has inspired you…in this or in any endeavor for the good of people, please consider donating some time or financial support to this inspiration. If you would like to help me, please consider going to http://www.walknowforautismspeaks.org/arkansas/rflinchum to join my 5K Walk Now for Autism Speaks team or to contribute to our fundraising for Autism Speaks.

As always, Thank You for visiting my blog,

Rachel Flinchum

(c) Rachel Flinchum 7/5/2013

The Flower and the Trees

The Flower and the Trees

A wilted flower

Leans towards the ground

Tall oaks and friendly aspens

Crowd out the light

And stand so tall

“Why are you wilted, little flower?”

A friendly aspen asks

“I cannot reach the sun.

It is too far away for me to reach it.”

“Why don’t you grow taller?”

Asks the oak.

“I am not a tree, I am a flower.”

The aspen and the oak

Exchange a glance over the flower.

“Well, all you have to do is grow

and become a tree like us.

It is easy. It is what we do.”

“But I am a flower,”

Says the little flower.

“I cannot be a tree.

I like being a flower.”

The oak and the aspen

don’t understand.

Why would a flower not want to be a tree?

A few days pass

It is now a windy day

And the wilted flower is blown back and forth

Crying out in fear,

Overwhelmed by the wind,

The flower huddles close to the ground

“Why are you crying out, little flower?”

Asks the aspen.

“The wind is so strong!”

“What wind?” says the oak

“I feel hardly anything at all.

Just a slight breeze.”

Another gust of wind blows by

And the flower is pushed over by the force

A few leaves in the trees rustle faintly

“Little flower, why are you so weak?”

Says the oak.

“You should become stronger

and then the wind won’t knock you over,”

Says the aspen.

“You don’t understand,” says the little flower

“I am not a tree! I am a flower.

I like being a flower!”

Exasperated, the oak says, “Why?

Being a tree is better.

We are able to reach the light.

We can feel the rain.

We have many other trees to talk to.

We are strong.

You are all alone

and you are wilted.”

“I like my colors,”

says the little flower.

“I like being able to see

all the animals and the bugs

that live in our forest.

I try to talk to the trees

so I won’t be so lonely,

But you cannot hear me

Unless you lean down.

But still I want to be a flower.

I could not be a tree.”

After this the oak and the aspen

Would lean down every day

To talk to the wilted flower

Time passed

And the trees easily forgot

About the little wilted flower

The flower could not play the same games

Or see the birds pass overhead

“The flower’s world is so small,”

The oak said to the aspen.

“Perhaps the flower should be moved,”

They thought,

To go be with other flowers

So one day they leaned down again

To see the little wilted flower

“We think you should go be with the other flowers,”

They told the little flower.

“But I cannot leave!” said the flower.

“But why not? There is nothing here

For you on the forest floor.”

“That is not true.

See that little bee that comes to be every day,

Without me, he could not get his pollen.

And what about the the baby raccoons

That I have been watching grow.

And the ladybug who sleeps

Under my leaves every night.

This is such a big world full

Of so many things

That are hard for a tree to see

“But you are so wilted, little flower,”

Said the aspen.

“I just need more water,” said the little flower.

So every day, the oak and the aspen

Would lean down and drop dew

Onto the little flower’s roots

At first, it was hard to see the difference

But as the days passed,

The little flower grew stronger

Was able to help the little bee more

And able to keep sheltering the ladybug

One day a big storm came to the forest

The oak and the aspen

Were afraid for the little flower

“The little flower will be blown away!”

They thought.

So they leaned down as far as they could

To shelter the little flower

“I am afraid!” The little flower said.

“The wind is so loud and it is so cold!”

“We will be here with you, little flower.”

All day and all night the storm blew through the forest

The next morning, the trees looked about

So many oaks and so many aspens

Had fallen to the storm

“Little flower, you have saved us!” They cried.

“If we hadn’t bent down to be in your world,

We would have been blown down by the storm.”

“No oak and apsen, I must thank you.

If you hadn’t come into my world,

I wouldn’t have wanted to survive the storm.

I love my little bee and my little ladybug,

But I have been a lonely, wilted flower

In a world of trees.”

By

Rachel –

A Mother of a Beautiful Autistic Flower I call Tyler

(C) Rachel Flinchum 7/2/2013
Please join me in supporting autism awareness and in supporting families that are growing up together with autism in their lives by donating to my Walk Now for Autism Speaks fund. Just a few drops every day will turn into something that could mean the difference between surviving the storm and wanting to survive the storm.

http://www.walknowforautismspeaks.org/arkansas/rflinchum