Dear Relative: What Are You Waiting For?

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Dear Relative,

Yes, I’m talking to you.  You know who you are.  You have an autistic child in your family.  It might be your grandchild or niece or nephew.  It might even be your own child.  I know you love him.  You want the best for this child.  I know you grieve for him.  If you had it in your power to give this child a ”normal” life, I know you would.  But you can’t.

You see, all of these emotions are normal.  For every family that must contend with autism – in particular severe autism – there is a period of shock, sadness, and feelings of loss.  Loved ones may invest a lot of emotional energy and money into finding therapies – all in an effort to give this child as typical of a life as possible.  You are hoping and praying for the day when he makes great strides – talks, plays, uses the toilet, and learns to read.  That’s wonderful, because hope is what gives us the energy to keep on fighting for our children.

But you seem to be stuck.  You are still caught up in the grieving and all the questions that cannot be answered.  You haven’t moved on to acceptance.  That’s a problem.  Because -while you are busy waiting, praying, and worrying -you have forgotten the child who is right here in front of you.

I know he isn’t always easy.  The typical children in the family don’t scream when you take them someplace new.  They can eat wherever you go.  They love the things you buy for them.  When you talk to them, they respond.  It may seem like all of the fun things you want to do with the autistic child in your life aren’t possible, and that makes you sad.  I get that.  Sometimes, those moments make me sad too.

The thing is, you have forgotten what your job is here.  Your job is to love and accept this child.  As he is right now.  Like every child in your life, he needs you too.  Yet you seem to be waiting.  Waiting for when he can do all the things you would like to do with him.  You spend time with the other children in the family, but you limit time with him.  He isn’t invited to spend the night.  And, because he doesn’t enjoy the carousel, the concert, or whatever – he gets left behind.   You figure he won’t notice.

The problem is that you might be right, or at least you will be soon.   He doesn’t notice you.  He doesn’t know you to be someone he spends a lot of time with.  He doesn’t run to you when you come to the door.   He doesn’t care if he pleases you.  He doesn’t know you love him.  Because love isn’t something that is simply declared – it’s shown.  And because you are busy avoiding what makes you uncomfortable, you aren’t showing it.  You are waiting for him to become somebody you understand.

But this child is already somebody now.  He has things he likes to do.  They just aren’t what you like to do.  He gives affection.  He just isn’t going to do so on command.  He likes to go places.  But those places aren’t going to be loud, filled with people, or in the blaring sun.  There are so very many special moments awaiting you both, and you are letting them slip by.

If you want to have a relationship with him, you’re going to have to do better.  He doesn’t know how to meet you where you are.  You’re going to have to meet him where he is.  Find out what he likes.  Accept his autistic behaviors.  Stop focusing so much on what you want him to be and accept him for who he is.  Take joy in him now.  Because the day you are hoping and praying for may very well arrive.  He is still growing and developing.  Still making connections and learning how to be himself in a very strange world.  And the time may come when he reveals how very much he noticed all along — and asks you where you were.

For both his sake and yours, I hope you have a good answer.

Do you have a relative like this?  What are your experiences? 

7 Things You Might Not Know to Ask for When Transitioning Your Autistic Child to Middle School

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“Middle school” is a scary phrase for most parents. Thoughts of your baby wandering around a big school, trying to find his classes and being run over by much bigger 8th graders are frightening. He will no longer be cocooned in the safety of his elementary classroom with a teacher who knows him well, and there is the expectation your child will be able to function more independently. But what if your child is on the autism spectrum? What if he has difficulty advocating for his needs? What if he is difficult to understand? Or becomes overwhelmed? How do you rest easy knowing that his differences may make him an easier target for bullies?

I am a middle school teacher/media specialist and an autism parent. In my 15 years of teaching middle school, I have encountered many children on the autism spectrum. Some struggle and, yes, some do quite well. I have learned small things can make all the difference for our special kids. Unfortunately, many parents don’t know they can ask for special assistance. Without the proper plans in place to begin with, it can take months or years for solutions to occur to teachers or administrators.

Every child is different — autism or not. The following ideas are things I have seen to be most helpful for spectrum kids surviving middle school:

1. A 5-minute early pass. If your child is overwhelmed by loud noises or people bumping into him, passing time in a middle school hallway can be upsetting. Ask for a laminated hall pass to leave each class five minutes early. Your child will then be able to use the restroom and make it to his next class in peace. A pass may also curtail bullying, which often occurs in the bathroom or hallways. Deans and guidance counselors utilize such passes for students for various reasons and it won’t hurt to have one. If you find your child doesn’t have a problem in the hallways, he can simply choose to not use it.  (This post is continued on WhattoExpect.com.)

On Writers Block, Mud Wrestling, and the Autism Blogosphere

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Alternate Title: What Happens When Flappiness Wakes Too Early and Gets to Thinking Without Any Idea of What She Plans to Write

Today my heart is waiting on a phone call that my mind knows won’t be coming.  A year ago today, my daddy called and asked me for the last time, “Will you be my Valentine?” – a little tradition between us that I loved.  A tradition that my little girl won’t get to remember about him. My heart is heavy.  I wish there was a place I could safely set it and not feel these raw emotions for just a few hours.  But grief doesn’t work that way. It’s been a hell of a week.  For personal reasons I can’t divulge and other dramas I don’t want to.  Since I didn’t already have enough on my plate, pneumonia decided to vacation in my lungs.  I’m tired.

I haven’t written much lately.  It’s not because I have nothing to say.  On the contrary, I have too much to say.  All of the thoughts are pushing and shoving, trying to get out of the door in my mind.  And since I don’t like crowds, I’ve just been sort of sitting back and waiting for them to calm down and line up in some semblance of order.  But the mind is a very uncivilized place.

So is the autism blogosphere.  If you aren’t a part of it, let me suggest you avoid it.  There’s a war going on right now.  It’s ugly.  Factions of advocates are angry with one another.  They bond together over whom they mutually hate, planning strikes and counter strikes in a war of words that no one is winning.  We live in a world where recent generations have little understanding of the commonly accepted rules of debate.  Thinking is very black and white, and one’s opinions of a single subject determine whether or not he is viewed as a person deserving of kindness and respect.  Autism bloggers write posts expressing their views, and – rather than simply commenting with a reasoned disagreement – others seek to discredit them by questioning whether they have a right to be heard at all.  Name-calling and personal attacks become a game whose winner is determined by the number of shares and likes received.  Because the subject matter is so close to the hearts of the participants, all of this is easy to get caught up in.  I know.

But today, I’m thinking about my father.  A man known to never say a bad word about anybody.  He was an attorney, and he knew a lot about arguing.  When you practice law for 40 years in a small city, you know all the players.  Every judge and attorney you know and like has been both on your side on cases and has worked against your side on cases.  You duke it out using the rule of law.  You win some, and you lose some.  But, when you bump into those folks at the deli, you don’t hold a grudge.  They made arguments that you didn’t agree with and maybe even won.  They may have won a case you felt passionately about and now saddened for your client.  But there isn’t an assumption of evil intent.  You don’t race out and publish articles attacking them as lawyers.  You don’t claim they have no right to practice.

Now I know that autism advocates aren’t necessarily lawyers.  It’s not a parallel for several reasons. But I was raised with this mentality.  That you don’t have to hate someone to disagree with them.  You don’t have to make it your life’s mission to discredit them.  You don’t need to be unkind simply because they see things differently.  You can argue and reason and even declare their statements to be illogical.  But you are never going to find anybody in this world who agrees with everything you do.  And you will wear yourself out and become a very unlikable character if you go around expecting and hysterically insisting that they do.

I do not require my friends to agree with me on every important issue.  I have friends who are pro-choice and friends who are anti-abortion.  I have friends who are pro-gun rights and friends who are terrified of guns.  Gay friends, straight friends.  Jewish friends, Christian friends, and even a couple of ordained witches.  I am positive that a dinner party with all of these folks would get lively.

The problem with the blogosphere is that the people behind the blogs aren’t really real to readers.  You see a joke, assume a tone, take issue with a perhaps unfortunately worded sentence and – in the absence of any other knowledge of that person – a real human being becomes just a viewpoint that you hate.  Unlike co-workers or acquaintances whose views you might disagree with, you don’t know that this blogger donates her time at nursing homes, feeds the poor, received a cancer diagnosis, makes from-scratch chicken soup for her neighbors, or whatever.

Fifteen years of working with middle schoolers has taught me something.  (Actually, middle schoolers teach you a lot of things.) I have had to counsel more kids than I can count who are caught up in some sort of drama.  Friends who become enemies by lunch time.  Girls who insulted each other on Facebook.  Every day of the week.  And what I have found is that when you take two people who are passionately in disagreement, being egged on by an enthusiastic audience, and instead take them to a side room and close the door, they will eventually speak to one another.  It takes a long time, but usually all it takes is one telling the other, “This is how I felt”.  And the other usually says, “I didn’t intend to make you feel that way.  But this is how I felt.”  Despite all the animosity and stubbornness, they will usually find common ground and make a truce.  I’ve rarely opened the door and found them still mortal enemies.  They still might not agree, but they have become real to one another.  Usually, you don’t have many problems after that.  Sometimes, they become friends.

Here in the blogosphere, we cannot do that.  Even in an email or private message.  One’s mind interprets the words sent in the context of what one already believes about a person.  They remain just a symbol of what you disagree with.  Combine that with the anonymity of the internet, and you have a recipe for meanness.

I have been the subject of criticism this week and read some mean comments about me.  People who like me have jumped in as well.  Friends of those on both sides have gleefully infused themselves into the drama.  All hell broke loose.  And I find myself sitting here, early in the morning, wondering how to scrub off all of this caked on mud.  Realizing that everyone in the wrestling ring is also covered in it and unrecognizable.

But there is no little room to go into in which to solve our differences.  I remain the symbol of a viewpoint, as do they.  I want to disengage, but I sincerely believe the issues too important to abandon.  A friend told me last night that I just don’t have the stomach for all of this.  And I think she’s right.  I don’t like conflict.  I don’t like people not liking me. I don’t like accusations I know to be untrue but feel powerless to correct.  This ride – blogging – has a been a wild one.

I have been sitting, staring at this screen for several minutes now.  But I still have no idea how to wrap this up neatly.  Except to say that, aside from anything having to do with autism or parenting, it is my sincere belief that the first rule of discourse is kindness.  That we must remember that those whom we disagree with are not necessarily evil.  They have their own experiences that have flavored their perceptions, and those perceptions are every bit as real and heartfelt as our own.  The problem is that most people simply don’t have the right words to convey to others who they are or where they are coming from.  Not really.  We try.  We fail.  We try again. But there aren’t enough words in all the combined languages of Earth to portray a single human heart.

And there is nothing to be done for that but to keep on trying.  While trying to keep in mind that most people really are good at heart.  Most believers in any cause are sincere and want to do good.  Whether or not I agree with them is irrelevant to how they deserve to be treated.  With respect, with civility, and with the benefit of the doubt I believe every human being should be willing to give to another – that we are all just trying to do the best we can with what we have and know.  It’s a hard principle to remember in the heat of anger.

But it’s the best mud repellent around.

“I hope that one or two immortal lyrics come out of all this tumbling around.”   -Louise Bogan

Poof!: Losing an Autism Diagnosis

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Guest post by Jessica Severson.

When my son was a baby, it was obvious pretty quickly that I didn’t fit in with the other moms. I didn’t want to get together and chat about breastfeeding or potty training. My son was on formula (which always required an explanation) and he was colicky for so long that you couldn’t call it colic anymore. He was a tough baby. He was often upset. Getting ready for naps was hellish. It only made it worse to sit around with other mothers who were so happy with their joyful, calm little ones.

I felt alone for a long time. Then my son was diagnosed with autism and I understood why I’d never fit in with the normal community of parents. We were different. And it wasn’t just in my head, it wasn’t just a difficult adjustment to motherhood.

So I started the search for community again. I found parents of autistic children of all ages. They understood how I felt, they knew all the conflicting emotions, they sat through hours of therapy sessions. I got advice and support and began to feel like maybe I belonged.

Over the course of 2 years my son’s improvement went from inch-by-inch to mile-by-mile. The issues he’d had began to fade: he went from nonverbal to a budding vocabulary, his meltdowns turned into plain-old tantrums, his stimming became normal pretend-play where trains chatted with zebras, his fear of other children subsided in favor of games and playgroups. We saw less frustration and more happiness. He became more easygoing, more outgoing, more enjoyable.

After his diagnosis I didn’t dare to hope for much. I wanted to love my son no matter what, but then all that I’d hoped came true, and so much more.

It should have been the best kind of news. But I couldn’t feel completely happy about it.Now I’m told that in a few years my son will be re-evaluated and his doctor expects that he’ll lose his diagnosis. I will no longer be An Autism Mom or A Special Needs Mom. I will no longer be a member of the community that gave me a home when I needed it most. Maybe it’s already started.

We will still be friends. But my experience, where I lived in the thick of autism for only a couple of years, can never compare with theirs. Their daily challenges, their searches for therapists and schools that care about their children and help them to become a part of the world, it’s no longer something I can empathize with. I am an outsider. Now I’m supposed to make my way among the NT’s (neurotypicals) that we’ve always talked about.

My journey wasn’t for nothing. It may have been short, but I learned lessons most parents never will. I’ve experienced the kind of heartbreak and guilt that most parents never have. I no longer live in a bubble of parental ego-stroking where I get to feel responsible for my child’s accomplishments. I’ve seen just how fundamentally my son achieves things on his own. I’ve learned that developmental milestones have nothing to do with mental or emotional intelligence. I’ve learned to never say, “I don’t know how you do it.” I know the secret: you just do it. You have to. There’s no other option.

Still, I’m not sure where I fit now. I don’t know who my peers are. I don’t know what I have to offer other parents. I used to feel good because I was out there helping people navigate a difficult time. It helped to get emails from parents who’d just received a diagnosis or concerned grandparents who were trying to figure out how they could understand this change in their families. Now, what do I say? How can I tell them to accept the diagnosis when I no longer have to make the same sacrifice? Do I want them to hope for an outcome like ours when I know it’s just not possible for everyone?

And then there’s the issue of how to feel about losing the diagnosis. I’m happy for my son’s progress. But I don’t want him to be ashamed that he was autistic. I don’t want him to feel like he is better than someone with autism. How do I avoid alienating adult autistic advocates who want autism to be something without stigma or shame?

I can’t answer these questions so I’m trying to focus more on my son. What impact will it have on his life to lose his diagnosis? Does he need to know he had it? Will we tell other people? How much is it a part of him and how much of it is separate from him completely? Will he have to worry about a higher risk of autism or other disorders with his own children?

I’m trying to take it a step at a time. I’m trying to find my way through day by day, just like I did when Graham was diagnosed. Maybe I’m ready for the normies. Maybe I’m not. But the thing I know for sure is I have a lot more friends now and a lot more support. Whatever comes, I think we’ll figure it out.

Jessica Severson

Jessica Severson is owner/writer at Don’t Mind the Mess.  Jessica’s bio is interesting enough.  I’ll let her speak for herself.  ;)  

 

What Autism Means to Me

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When asked to write about what autism means to me, I jumped right in. I had a metaphor ready, and I set my fingers to the keyboard. But everything I typed in my first draft was no good. So, I tried to look at it from another perspective. Then another. Before I knew it, this simple question gave me a serious case of writer’s block. It seemed that no matter what I wrote, someone would take issue with it. Somebody would angrily declare, “That’s not what autism is to me!”

And he’d be right. Autism can be described. But it refuses to be defined. That’s because autism will never mean the same thing to two people. Especially if those people are coming from different perspectives. Parents vs. teachers. Grandparents vs. parents. Science vs. conspiracy theorists. Parents of “low-functioning” children vs. “high functioning” self-advocates. The media. Public perception.

It’s a lot of cooks in the kitchen. Their problem is that they can’t all agree on what they’re cooking. They all want different things. They all approach autism from their own subjective experiences. They observe autism from their respective places and report back to the world – which constructs its concept of autism from these reports. And that is problematic.  (This article is continued where I’m guest posting today at A Dog for David…)

When Siblings Have Special Needs

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My beautiful Bronwyn.

Our siblings. They resemble us just enough to make all their differences confusing, and no matter what we choose to make of this, we are cast in relation to them our whole lives long. -Susan Scarf Merrell

When my husband and I decided to start our family, I knew one thing right off. I wanted my child to have siblings, and I wanted them to be close in age. Having been an only child myself, I envied my friends’ boisterous households. Say what you want about the benefits of being an only child. But playing with flashlights under bed sheet tents just isn’t as much fun when you’re by yourself. And now that I have mourned alone the passing of my father and am dealing with the declining health of my mother, I have a greater understanding of what a sibling really is.

So, within 11 months of my daughter Bronwyn’s birth, I got pregnant again. When she was 20-months-old, we were blessed with her brother, Callum. Having two babies under the age of two was quite an challenge, but I had all sorts of pre-conceived notions of how close they would be, how well they would play together, and how they would one day have each other when their father and I are no longer here. Visions of little league, dance lessons, scout meetings, and excited Christmas mornings danced in my head. And I briefly enjoyed the illusion that life would be what I had ordered up.

Continued at What to Expect, where I am guest blogging today…

School Essay Planning Guide

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This has nothing to do with autism.  But I’m a teacher/media specialist, and I know that many of you have children and grandchildren out there who might benefit from this.   I created this today (along with our language arts team and a FDOE writing consultant) to help our struggling writers understand the writing prompt and keep their focus.  Kids often don’t understand what effective writers ask themselves during the writing process.  We will be using this to help them analyze a variety of writing prompts and essays as well as to write/evaluate their own essays.  This can be used with both middle schoolers as well as high school students.  If you are a teacher, feel free to copy and use to your heart’s content.  :)

Essay Planning Guide

Autism Shines – Callum

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Here is our contribution to the wonderful Autism Shines project.  Autism Shines is an effort to cast a positive light on our spectrum children, rather than allow the misinformation in the media to contribute to public fear.  You can show how you or a loved ones shines as well by uploading a picture to their site or Facebook page.

Special thanks to Lexi at Mostly True Stuff for helping with our picture.

 

Growing Pains: One Year of Flappiness

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 A year ago, I sat on my couch – staring at my computer screen, trying to come up with an original name for a blog.  I don’t remember everything I tried, but I do know just about every domain referencing puzzle pieces is taken.  (I’d like to take the time, on behalf of the autism community, to issue a huge mea culpa to the online jigsaw puzzle industry.  Sorry.)  After giving up on puzzles, I started over with flapping, then flappy, then happy – and Flappiness Is was born. 

I needed an outlet.   I looked at a few autism blogs (quickly realizing special-needs parent blogging wasn’t exactly a new idea).  I noted that most of them had a presence on social media and resolved to do the same.  And then I wrote my first fledgling post.  My goal was simple.  I just wanted to talk to a few people who knew what I was going through. 

And then my world expanded.  I can tell you I never dreamed of the following this blog would attract.  The heartfelt stories of those in the trenches.  Words of wisdom and motherly reassurances from women who’ve already raised their children.  Honest, illuminating, and kind perspectives from self-advocates.  Emails and private messages comparing notes, asking for advice, and saying thank you.  The sharing of tips, advice, resources, information from so many.  I never imagined that this little labor of love would give me so much more in return. 

I’m not the same woman I was one year ago.  My skin is a lot thicker.  I’ve gotten my son formally diagnosed, enrolled him in public school, watched my beloved father pass away, dealt with probate, renovated a house, moved, put my innermost thoughts and feelings on the internet, gone viral, been published in a few places, encountered scathing criticism online, and had a major health scare.  I’m evolving from someone who cared what everybody thought to one who realizes she can’t please them all.  My sense of purpose is growing.  And I’m realizing that I still have dreams of my own that are worth pursuing.

All because of you. 

Yes, this blog has been an extraordinary experience for me.  I still cannot believe that people have been interested in what I’ve had to say over half a million times now.  And I’m so very grateful for it.   I have made amazing friends in this blogging journey.  Wonderful people who have validated my concerns, joys, and even my darkest moments.  Tireless advocates who humble me in their devotion to and efforts on behalf of our cause.  Self-advocates who inspire me to dream big dreams for my son and all those like him. 

Thank you for casting light upon this path, for showing me the surest places to set my feet, and for reaching out to hold my hand.  It’s a good thing to know you’re not alone.

Thank you.

 

 

 

 

7 Tips for Being a Friend to a Special-Needs Parent

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Today, I’m honored to be guest posting for WhattoExpect.com.  

Three years ago, I gave birth to a beautiful baby boy we named Callum. He was, and continues to be, a joy to us. But, shortly before he turned a year old, I began to notice the telltale signs of autism. We soon were thrown into the world of developmental therapies, specialists, and ESE. It was a frightening time of worry for his future and adjusting to a reality not quite like the one we had envisioned. And, though we adore him and wouldn’t trade him for the world, his needs have certainly affected every part of our lives. One of the things I wouldn’t have expected it to affect was my friendships. But it did. Some of the people I expected to be there weren’t. And some people I never expected to be there were. Often, I have noticed a hesitation or awkwardness on the part of friends who just don’t know what to say or do. I know they care. And I know they mean well. They are, quite simply, at a loss.

Here is what I would like to say to them and others like them, if they were to ask how to be a friend to a special-needs parent:  Continue Reading…