Category Archives: People Who Clearly Raised Their (Normal) Children Better Than Me

General whining and complaining about people who think they know better…

No Dead Bodies Required – On Parental Effort in Disability

dead-bodyIf you have an autistic child, you’ve seen the stories. Friends tend to tag you in them or PM you to share. They’re stories of autistic kids who didn’t talk but do now, children who sing the national anthem, young women who compete in beauty pageants, and those on the spectrum who graduate from college. And you don’t mind the stories, because human beings persevering in the face of adversity is a beautiful thing.

But invariably, somewhere in the story is a quote that goes something like this:

“When experts told her her son would never talk, never have friends, never graduate, she declared ‘Over my dead body.'”

Those quotes are all sorts of inspirational – for some. But if you have a child whose disability is severe, such quotes are felt like a slap. Because some disabilities cannot be overcome. They can be accepted, worked with, planned for, and accommodated, but no amount of parental love and determination can erase them. Callum is not going to go to law school. He’s simply not wired for that, and I can’t rewire him. The fact that I can accept that and love him unconditionally does not reflect him having not been raised by someone willing to try harder.

Because – over my dead body – will he be relegated as somehow less worthy for not doing the unexpected and unrealistic. The presence of an autistic adult in the world who doesn’t make the newspaper is not a statement of failure. Not of society, not of his family, and certainly not of himself. And other than steadfastly insisting he be given every reasonable opportunity any other person has to live, learn, and grow, no other declarations need be made – and no dead bodies required.

On the Giving Up of “Hope” for My Disabled Child

22728733_10212165871236890_6396846401820621578_nA couple of weeks ago, I listened to a conversation between parents of autistic children. The first – a mother and father – were relating their experiences as parents of a severely autistic, nonverbal child with intellectual disability and discussing how they love, enjoy, and accept their son as the person he is.

The second – a mother of an autistic adult – interrupted them with oversimplified advice to “just [insert unsolicited opinions] and he’ll be fine”, noting that her child is “now married and doing fine”. She finished with “You’ll see. Don’t give up hope.”

The parents of the severely disabled child were a class act while struggling to not argue with the woman they clearly saw as well-intentioned. But I knew what that patience was costing them on the inside. I know what being on the receiving end of such advice really feels like.

And it has nothing to do with resentment that her child is doing so well in life.  It has everything to do with a pervasive belief that somehow accepting the limitations of a severe disability is “giving up” on a child. You hear this mantra from friends, neighbors, educators, etc., but it’s worse when it comes from a fellow special needs parent.

My son has a severe disability that places him in the “highest needs” category. He is considered functionally nonverbal, severely autistic, and intellectually disabled. He is old enough now and has had enough supports in place that we can make some realistic, informed predictions about future supports and transitional planning. Is it possible we’ll be wrong? Sure. But with all things considered, it’s not likely.

What I want to know is how is my acceptance of who he is “giving up” on him? The implication is he’s somehow a failure if we do “give up” and he doesn’t achieve what others believe is necessary for him to be a successful human being. Is he a failed soul should he not grow up to go to college or marry? Is he our failure if his brain simply isn’t wired to do those things?

Is a paraplegic a failure if his spinal cord fails to regenerate?  No?  Then why is my child a failure if his brain fails to form neurological connections? Where did anyone get the idea that all we have to do is “believe” to alter a person’s physiology?

If you know or love someone who overcame early developmental challenges but went on to live a fairly typical life, that’s great. I’m honestly very happy for them.  It makes life easier if you can go that route.  But do the rest of us a favor and cease insinuating we aren’t doing something right if it’s not in the cards for our loved ones. My son’s future is ultimately not going to be the result of “just believing” in him. I already believe in him. I believe he is delightful. I believe his soul is beautiful. I believe he has dignity. And, unlike those who tell me to not “give up hope”, I believe he is worthy – just as he is.

So, am I giving up “hope”? You’re damned right I am. I’m giving up hope of him being anyone other than the amazing person he already is. I’m giving up “hope” in unrealistic dreams of futures he isn’t likely to have, and I’m replacing it with genuine hope for him to be the happiest him he can be. And I’m doing that with all of the IEP goals, therapies, love, and exposure to his world that I can pack into his formative years. But in the end, he’s going to be who he is meant to be. It’s good enough for me.  It ought to be good enough for everyone else.  

And, no.  I’m not going to give up hope for that.

I May Be Oversharing about My Special Needs Child, and That’s Okay

autismscrabbleI write about my children — in particular, my autistic child — on the Internet. I write about them and share my own experiences in raising them — for complete strangers to read. My joys, mistakes, successes, grief, guilt, self-doubt, and even those dark, middle-of-the-night moments of all-encompassing fear. I write about it all. That’s me. I’m a special needs parent blogger.

And there are some folks out there who take issue with it.

There are those who question the wisdom of sharing my child and my life with the whole world. On the surface, my actions seem unwise. Why would I “overshare” with the world? Why not just find real-life friends and support? Why do I put myself “out there”?

Well, just as the world isn’t an easy place to be for those with special needs, it often isn’t much kinder to their parents. A hundred years ago, parents of special needs children were likely to have larger families — sisters and brothers who helped with the daily needs of the family and home. Because people started their families earlier, there were often multiple generations able to help out. More aunts, uncles, cousins, and grandparents to call upon.

Yet, special needs families today aren’t usually so fortunate. Many of us are spread across the county — far from family. Many, due to the extended start of childbearing, no longer have the wisdom and comfort of our mothers, aunts, grandmothers, and other mothers who’ve made this journey before. We don’t all have the support of a church family or neighborhoods where we all know each others’ names.

So, special needs parents (and all parents really) find themselves adrift in a society in which, “How are you?” has no more meaning than “Hello.” We are isolated, with no one to tell us that we are doing it right, that we might try this, or that it isn’t our fault. Special needs parenting is a lonely journey for so many of us.

The Internet has changed that somewhat. In the last two years, I have interacted with thousands of other special needs parents. Those who are like me — just starting out and wondering if they are going to make it. Those a few years in — who share resources of what helped them not so long ago. Those whose children are grown — who reach out with a gentle pat and say, “Honey, you’re doing just fine. What you are feeling is normal. It’s gonna be okay.” All of them — all of them — sustain me and others like me. They are the community we need and cannot always find locally. They connect us and remind us of a basic human need — to know that we are not alone.

There are some who question the loyalty of a parent who would “violate her child’s trust” by exposing his needs and differences to the world. Why would I choose to share that which Continued at WhatToExpect.com…

Letter to the Family of Mikaela Lynch

broken heart

This is but one of many posts in the event “An Outpouring of Love for the Mikaela Lynch Family”.  

Last summer, my then 3 year old autistic son wandered out the front door of our home.  His 5 year old sister was trying to help her daddy bring in the groceries and left the front door cracked.  My husband thought our son was with me.  It took several minutes for us to realize that he wasn’t in the house.  That’s when we both looked at each other in horror and remembered the groceries being brought in.  We raced outside.  I was frantically screaming his name while reaching for my cell phone to call the police when I heard my husband call out from the back yard that he’d found him.   I have never been so grateful in my life.  The idea that someone or something that might have harmed him could have found him –instead of us– still chills me.  I’ll never forget that moment.

My husband and I are loving and responsible parents.  We have bolt locks and chain locks at the tops of our doors.  We have an alarm system we set to instant alert when we are inside our home.  We use our car’s safety child locks.  Even in the grocery store, I keep one hand on my son’s leg (sitting in the buggy) while reaching for the milk.

But he managed to walk away unnoticed anyway.

That’s because life is unpredictable.  It’s because I cannot afford a bodyguard and full time nanny.  It’s because we are just human –not computers –and our brains aren’t so good at multi-tasking.  It’s because our unique children’s minds and spirits are often drawn to the very things that can harm them.

Your loss is unspeakable.  And, yet, while you are going through the first dark days in the club that no parent ever wishes to join, you are being attacked.  Attacked by some in the media – who value contention and traffic over truth.  Attacked by average people – who do not understand autism and have never walked in your shoes.   All this while likely suffering the greatest attack of all –  the heartbroken regret of your own mind, bashing you for your lack of godly omniscience.

It’s not your fault.  Anymore than natural disasters, plane crashes, or cancer.  Those of us who have walked in your shoes – that of being a parent to an autistic child – have all experienced close calls and the subsequent emotional beating we give ourselves.  No, we don’t begin to know the pain you are in right now.  But, I assure you, we are haunted by it.  Haunted because we know that your child could so very easily have been ours.  Haunted because we know too well the giant bulls-eye an especially vulnerable child carries in life.  We are sickened by the pain insinuations of parental neglect must have on you.  We know the love you have for your daughter.  We know how hard you worked to help her meet the challenges of a very confusing world.  We know.

shield

When I heard of the contentious “news reports” directed at your family, it reminded me of an infamous “church” who seeks to further their own notoriety by protesting the funerals of innocent Americans.  As if, by creating a media circus of a family’s grief, they could further their own “cause” — in this case nothing more than the pennies earned on each click of the mouse.

But then I thought of the thousands of people who have made that church’s efforts futile by a simple act — a symbolic shielding of those protestors from the view of the deceased’s loved ones.  I thought of a local family targeted by that group and how they were comforted by nothing more than the presence and spare bedsheets of complete strangers.  No, I am not naïve enough to think that a flash blog will help to shoulder any of your grief or deflect the outrageous criticism directed toward you.  I know we are too late to prevent you from hearing those ugly insinuations.  But please know this post — along with hundreds of others — to be our sincere effort to try.  And though we are not likely to ever meet in person, know the collective arms of special-needs parents everywhere are wrapped around you in love and empathy.

If you have a child on the autism spectrum and would like information on autistic elopement — along with a link to a kit to assist you in a wandering crisis, visit AWAARE.

Ethical journalists treat sources, subjects and colleagues as human beings deserving of respect. Journalists should: * Recognize that private people have a greater right to control information about themselves than public officials and others who seek power, influence or attention. * Show good taste. * Avoid pandering to lurid curiosity. * Use special sensitivity when dealing with children. * Show compassion for those who may be affected adversely by news coverage. — (http://www.spj.org/ethicscode.asp)

One click on this image will send a message directly to the irresponsible publication in question — without rewarding the “reporter” with pay-per-click publicity. 🙂

An Outpouring of Love for the Mikaela Lynch Family

blog loveToday, the body of 9 year old Mikaela Lynch was found.  Like so many autistic children, she wandered off and was eventually drawn to water.  My heart breaks for her devastated family — who have since been the targets of cruel accusations from those who know nothing about how easily such a thing can and does happen to our children.

This could have been my child.

Please join those of us in the autism & special needs community on Monday, May 20th in writing a blog post (bloggers) or a Facebook status update (non-bloggers) in support of Mikaela Lynch’s family.

We want to flood social media with love for the Lynch family and those who have suffered similar losses — under the cruel scrutiny of media and those who judge without knowing of what they speak.

If you would like to be a part of this movement please share this event & help us get the word out!

Note:
1) We feel it is important to NOT use Mikaela’s image without the consent of her family, now that the worst has happened.
2) We also do not want to send free traffic to those who have – without cause – cast suspicion on her family and other families who have experienced similar tragedy. In voicing your support, please do not link to or reference the journalist directly. She’s had quite enough fun already.

Speak No Evil: 8 Things Family, Friends, and Complete Strangers Shouldn’t Say to Parents of Autistic Kids

Nosiness isn't any more attractive in you.

1.  “Are you planning to have any more children?”  Hmm.  Are you planning to have sex tonight?  Why people ask such personal questions of strangers or acquaintances is unknown to me.  But even if you are acquainted well enough with someone to discuss future children, think about it before asking the parents of an autistic child.  Lightning can strike in the same place twice.  This is a deeply personal issue for some of us.  Statistically, we are more likely than not to have any future children not affected by ASD.  But the risk is higher.  And the ASD affecting another child could be more severe.  Yet, we may want our children to have siblings.  We may want more children to love.  We may always feel the loss of a child we had expected to one day have but choose not to after considerable thought.  Parents of ASD kids do not need your opinion on this issue – unless we ask for it.  Besides, we happen to love our ASD kids and may not find them quite the tragedy some would have us believe.

Moving in with us? Then, no, free advice is unwelcome.

2.  “What are you going to do to about such and such behavior of his?”  Well, are you referring to stimming behaviors?  Because he can’t stop those behaviors any more than breathing.  It’s who he is.  Stimming fulfills a need.  If the stimming behavior is harmful or dangerous, then that obviously needs to be addressed and replaced with a safer one.  But some kind of stimming will happen no matter what, if the child needs it.  If you are asking about his refusal to speak, socialize, or observe social conventions, then your question is a loaded one.  One that is answerable only by the child’s ASD severity, temperament, and possibly years of intervention.  Unless you plan to quit your job, obtain a degree in behavior analysis, sell your home and move in to become a permanent ABA coach, it’s best to avoid leading questions and insinuations such as this one.  With all due respect, you may not have all the information you need to discuss or judge this.

"As long as I'm living, my baby you'll be." - from Love You Forever

3.  “She is so lucky that you love her so much and that she has you for a parent.”  Please take a moment and think about what you are suggesting.  Don’t all children deserve the love of their parents?  If a child – through no fault of their own – is born with some physical or mental imperfection, should she have to accept a reduced level of parental love and pride?  Children are owed love, pride, and affection by their very birth — not luck.  If you wish to dole out compliments, why not simply tell us how cute or sweet our kids are or that you think we are good moms and dads?  That works for parents of all kids.

Our babies are just as precious to us -- no matter what side of the vaccination debate we take.

4.  “Did you vaccinate your child?”  The very fact that you would ask this question means that you are divided into one of two very opinionated camps.  The first being the Vaccinations-Are-the-Sole-Sause-of-Autism-and-What-a-Shame-You-Signed-Off-to-Do-This-Thereby-Causing-Your-Own-Child’s-Autism.  The second being the I-Hope-You-Aren’t-Some-Stupid-Whacko-Who-Is-So-Irresponsible-as-to-Not-Protect-Your-Own-Child-from-Disease-Therefore-You-Shouldn’t-Be-Allowed-to-Even-Be-a-Parent.  Parents of autistic kids get jumped all the time with this question.  Don’t ask it.  You force us to either confront our own regrets or justify our choices to a disapproving audience.  Both scenarios stink.

If there really was an instant cure for autism, don't you think it would have actually made the evening news? The polio vaccine certainly did.

5.  “You should go to such and such a doctor or try this who/what CURED some Random Person I Read About in a Magazine’s kid.”   Even supporters of DAN treatment and dietary intervention (GFCF), don’t usually claim a total cure.  After all, a total cure would mean the dietary intervention is no longer necessary.  Instead, some parents have reported improvements in their children’s symptoms and interaction.  Some significant improvements.  And some non-existent ones.  Many of us have tried it and abandoned it due to lack of results.  Many of us support biomedical treatment and are happy with the results. Some of us have tried other regimens and therapies with varying results.  Again, you force the parent into justifying their choices.  I promise you – promise you – we’ve all heard of biomedical and other treatments for autism.   And made our decisions on the issue based upon our own research and instincts — long before you read that magazine article or talked to your friend’s cousin twice removed.

Would that we all could see into the future...

6.  “When is he going to talk?  Will she be able to read?  Will he be self-sufficient?  Will she ever be able to marry?”  Honestly, we don’t know.  Autistic kids do things on their own timetables, sometimes years after their typical peers.  Some will go on to college and raising families.  Some will live on their own with minimal assistance.  Some will require life-long care.  These are the questions that haunt parents of autistic children.  These are the questions that wake us up at night and steal joy from the here and now.  Please don’t remind us of our worries.  It serves no purpose to be reminded of what we cannot control.  Look inside your heart and consider your purpose in asking such questions.  Curiosity isn’t a good justification.  Instead, simply ask how our children are doing, though you might get a longer answer than you were hoping for.  If things are looking up, you can be assured we’ll enthusiastically brag about it.  If they aren’t, you won’t have asked us questions we cannot answer.

No. I promise you. No matter what, you could and you would.

7.  “I couldn’t do what you do.  I could never handle it.  God gave you this child for a reason.”  I know you mean well.  But, really, if your child had been born with physical or mental challenges, would you have abandoned him?  Of course not.  We didn’t volunteer for this, nor did we volunteer our child for the difficulties he faces.  And some of us take exception to the idea that God did this to any child.  I don’t think the suggestion that God inflicts any difficulty or malady on defenseless children speaks too well for Him, does it?  Autism happens.  It happens to children.  And it happens to the parents who love them.  You would have loved your child just as much had it happened to you.  If you want to tell me you think I’m doing a great job,  thanks for the encouragement.  But if you convince me that you wouldn’t do the same for your own child, then I don’t think I would like you very much.  And I wouldn’t believe you anyway.  I think you would walk through the very same fire for your precious child as I would for mine.  Really.  Have a little more faith in the power of love.

If your expression resembles this when speaking to a parent of an autistic child, go someplace else until you can control it. Really.

8.  The Look of Tragedy.  Believe it or not, the Look of Tragedy is a statement in itself.  You might think that your expression of sadness and devastation isn’t obvious, but it is.  If you are overwhelmed with sadness for us or our children, just wipe that expression right off your face.  Why?  Because it hurts.  Practice it in the mirror if necessary.  But the Look of Tragedy is the worst thing to say of all.  It says that someone has looked at our situation and sees it as hopeless.  Trust me, hope is a very precious thing for special needs families.  Please don’t endanger ours.

“You people are awfully sensitive.  So what can I say?”  We know you probably mean well.  But sometimes the thoughts we don’t want others to hear come through loud and clear in the things we say.  When people or their loved ones have obvious physical or mental differences, they hear the same thoughtless comments repeated to them for years.   This can make you overly sensitive to be sure.  However, I firmly believe that most people are good and don’t want to be hurtful to others.  I believe that, if shown how a simple statement can be needlessly upsetting to others, that most people will stop saying it.

Here are some things you can safely say:

“I love you.”

“How are you?  How is your family?”

“Is there something I could do to help?  How about if I….”

“You are a great mom (dad).”

You really can’t go wrong with these.  With any parent of any child.  🙂

If you enjoyed this post, you might also like:  “Dear Shopper Staring at My Child Having a Meltdown in the Grocery Store” or “So You’re Wondering If Your Child Might Be Autistic”.

You might also enjoy:  “What to Say to the Parents of a Baby with Down Syndrome: Dos and Don’ts”.  

We Don’t Talk No Baby Talk Round Here!

Do you remember the days when people spent more time raising their own children than telling other people how to raise theirs?  When no one particularly cared what brand of baby bottles you were using, whether or not you breastfed a respectable period of time, what philosophy of child-rearing you subscribe to, or how much TV you allow your kids to watch?  Yes, I know that everybody has always had an opinion.  That certainly hasn’t changed.  But everyone didn’t seem to be quite so determined fifty years ago to impose it on others.

I look at blog posts, education journals, and parenting articles and I see a lot of highly vocal parental pride.

“We are believers in attachment parenting.”

“We share a ‘family bed.'”

“We live an organic lifestyle.'”

“We breastfed exclusively for two years.”

Please do not misunderstand me.  I have no contempt whatsoever for these parenting styles and practices.  And I’m all for people raising their children with thought and a deliberate attention to their children’s needs.  It’s the tone of moral superiority some proponents of various parenting theories get that unnerves me.

I came across one such sound bite the other night.  Actor Neil Patrick Harris was doing the obligatory parental bragging about his twins and boasted that his family has a “no baby talk” policy.

Now when I say I’m annoyed with this, please do not interpret that as me being all kinds of upset with Neil Patrick Harris.  He isn’t the first person to say it, and he is in all likelihood a perfectly nice man who clearly adores his children.  He simply repeated a phrase that is echoed by many parents –some of whom are excessively confident in their child-rearing convictions.  I’ve been guilty of it too, so let’s not run out and throw stones.  We’re none of us perfect — which is precisely my motivation for writing this.

As a teacher and a parent of both a highly verbal, early talking child and a child with an autism spectrum disorder with severe language delays, it annoys me when people self-righteously proclaim they “don’t speak baby talk” to their children or that their children are so verbal now because they didn’t then. Language acquisition is so much more complex than that.  Children thrive the more they are spoken to and interacted with period, no matter what the language or style of speaking.  There are behavioral studies in linguistics that demonstrate high-pitched speech toward infants is normal across most cultures.  It appears to be somewhat instinctive.  And, really, there are an awful lot of brilliant and articulate men and women throughout history whose mothers and fathers spoke sing-song silliness to their beloved babies.

Neil Patrick Harris obviously was not discussing autism or special needs conditions.  Nor are most of the “no baby talk” proponents.  But when they make these statements,they are implying that baby talk is somehow harmful to typical childrens’ language development.   Parents whose children are language delayed or simply not as impressive as their more precocious peers, have now been put on notice that they are somehow to blame for this.

Ditto for TV watching.  Yes, yes, I know all about this debate as well and have read the same studies as you have.  And, certainly, children are much better off running around outside making mud pies than watching cartoons.  However, I do not buy the argument that children who’ve seen a little television are miles behind in their development.  I – and most of my friends – grew up watching an awful lot of Sesame Street, Mister Rogers, The Electric Company, and so forth.  In the evenings, I loved The Dukes of Hazard and Charlie’s Angels.  Despite my obviously intellectually deficient childhood,  not only do I know how to wield a library card, I also managed to graduate college.  So I don’t buy the “developmental delays are caused by watching too much television” argument either.  The same thing goes for children who were bottle fed, made to sleep in their own beds, or given processed food once in a while.

When people have misconceptions about the causes of developmental delays (or the lack of excessive genius even), I get tense.  And my opinion itches to be set free.  Because having it implied that you are to blame for a child’s delays hurts – and hurts needlessly.  When you say to a parent of a child struggling developmentally that they should start or stop doing some particular thing, you are possibly coming at someone who lives with self-doubt every day.  We all wonder what we could have done or could do better.  We question our decisions.    And some may wonder if it really was Yo Gabba Gabba that caused their child’s autism after all.  (For the record?  It wasn’t.)  The truth is that, with the exception of severe neglect and malnutrition,  most developmental delays have a physiological or genetic cause.  Despite the abundance of information proving that, people still feel free to share their “expertise” with hapless parents everywhere.

Having a developmentally delayed child is much like standing in dirt crossroad in the middle of nowhere.  The right path is not clearly marked.  We try to peek a bit down every road to determine the best one to take.  There are few road signs and no mile markers. You set off down the road you have carefully chosen.  You hear the people off in the distance who took other paths.  Some of them – whose proximity you can’t quite determine – are reporting how terrible their journeys are.  Some of them are joyfully shouting how pleased they are with theirs.  You can’t tell who is closer or farther away.  With each successive voice added, you are left standing alone on the road trying to determine if you should begin making your way back to choose another.  You are left amidst a cacophony of voices shouting at you to head in their direction.  But, in the end, you are still standing on that road all alone, tightly holding the hand of your child while trying to appear confident.   It’s a frightening and lonely feeling.  One no parent will ever forget.

And the thoughtless comments and boasting of others can take you right back to that road in that moment of indecision.

Here’s what we know for certain about raising children:

1.  They need to know they are loved and valued.

2.  They need to be protected from illness and harm.

3.  They need clothing, nourishing food, and shelter.

4.  They need an appropriate education.

5.  They need opportunities to play and safely explore their world.

That’s about it.  It doesn’t matter what race, religion, or tribe you hail from, this is what you need to grow into a healthy, well-adjusted adult.  And I just want to take a moment to say to all of the parents out there whose children are receiving these five basic things:   You are a good mom.  You are a good dad.  Your children are who they were meant to be all along.  You’re doing a good job — not matter who is suggesting otherwise.

And I’m going to try to say it to myself more often – the me who worries, overanalyzes, and doubts.  The me who believes it easily of others but finds it harder to believe it of myself.   For, like all of you, I’m really doing the best I can.

“In spite of the six thousand manuals on child raising in the bookstores, child raising is still a dark continent and no one really knows anything.  You just need a lot of love and luck – and, of course, courage.”  ~Bill Cosby, Fatherhood, 1986

So, what annoying things have been suggested to you for better raising your special needs child?

Dear Shopper Staring at My Child Having a Meltdown in the Grocery Store

Dear Shopper,

Yes, I know.  I’m well aware that my child is screaming.  Not just a regular scream, but an ear-piercing, sanity-shattering screech.  Even if I wasn’t seeing and hearing it, I would know by the expression on your face.

Clearly, you have raised your children better than me.

That is what you were wanting to say, right?   There certainly can’t be any other purpose to you stopping in your tracks to stare or elbow your companion  or better yet — give knowing looks to other shoppers passing by.

I have no doubt that you have wonderful, well-behaved children.  Grown, tax-paying, law-abiding citizens who would never have dreamed of screaming like this in public when they were children.  Judging by your expression and utter exasperation, you’ve never hesitated to let them know who was boss.

And I know that you did your best with your children, that you loved them, and want all children to have a solid upbringing in which to start their lives.  You are, in all probability, a good person.  You probably don’t mean any harm.

This is what complicates what I want to say to you.  Because, despite my anger towards you, I happen to have been raised well too.  I don’t want to be ugly, even though right now I feel like it.

Because I know some of that anger is misdirected.  It is misdirected because I, too, have stood in judgment of someone like me.  I, along with almost everyone, have stood in public and watched a scene like this one play out and thought to myself, “Clearly she has no control over her children.  When I have children, mine will never behave like that.”   I, like most people, wasn’t quite as obvious about it as you.  I didn’t stare or make comments that could be heard.  But I was every bit as decided.   So, some of my anger is really directed toward Human Nature, who refuses to be put in its place.

The nice thing about human nature, however, is that it can be overridden.  And all it takes is but a single experience, a single human interaction, to the contrary of your own strongly held convictions.  Then presto whammo — you are a new and hopefully improved person.

Let me introduce you to my child.  Like you, I marveled at the miracle of life upon becoming his mother.  Like you, I rocked, burped, and inhaled his sweet baby scent and thanked God over and over for the gift of him.   Like you, I had certain dreams for my child.  There your path and my path diverged somewhat.

My precious child is autistic.  Yes, I’ve seen Rain Man, and, no, my son is not likely going to be a great card counter.  The truth about autism is that it encompasses a wide spectrum of abilities.  And, like you and me, every autistic child who has it is different from the next.  Yet they do often share some similar traits – sensory overload and meltdowns are one of them.

Every person on the planet has what I think of as an internal alarm system.  Most of us have ours in good working order.  But some people with autism have what I like to call a hair-trigger alarm system.  Theirs can go off with what seems to average folks like little to no provocation.  But there IS always provocation.  Non-autistic people simply aren’t as sensitive to seeing and hearing the triggers, and that’s when the alarm goes off.  And when it does, it can be loud.   Everyone in the vicinity wants nothing more than to have it turned off, including the people who love them.  When you see me “placating” my child and “giving in” to his tantrum, I’m really just desperately looking around for the alarm key or trying to remember the right code to turn off that blaring alarm.  It isn’t his fault.  And, no matter how upsetting it is for you, let me assure you it is that much more upsetting for him.

I’m sorry that you haven’t had quite as pleasant of a shopping trip as you had anticipated.  It hasn’t been so pleasant for me either.  Problem is — I have to feed my family, deposit my paycheck, pick up prescriptions, etc. just like you do.  And, unfortunately, no one arrived at my house today to watch my child so that his autistic behavior wouldn’t upset anyone in public.  I have to leave the house and so does my child.  Because I have to teach him about the world.  I have to let him practice controlling his alarm system.   So that he, too, can go out into the world successfully too.

With so many advances in early detection and therapy, many of us will be able to see most of those dreams come true for our unique children.  And for some of us, our dreams will have to change for our children.  We may need to re-define happiness and success.  For life is like that.  We constantly have to reevaluate our expectations of ourselves, others –and, sometimes, even the grocery store.

I’m hoping that your single human interaction with me has given you an opportunity to be a better person.  For, with 1 in 59 children being diagnosed with autism now, you are going to have a lot more opportunities to make a positive impact in the life of someone like me.  All it would take would be a smile, a pat on the back, or a “Bless your heart, honey, hang in there” to refill a stressed out parent’s reserve of patience and calm.  You could be the bright spot in our day.  And, then, if you want, you are welcome to ask all the questions you want.  Your curiosity doesn’t offend me in the least.  Most of us aren’t the least bit upset to talk about our kids – any more than you are.  If anything, it is an opportunity to educate and dispel myths.

And, maybe, just maybe, you will be standing there when the alarm gets turned off.  Maybe you will get to see what every mother wants the world to see – the wonderful personality of her child, in our case hidden behind a mask of fear, anger and frustration.

Who knows?  Maybe I’ll get to see the one hidden behind yours.

If you liked this post, you might also enjoy:

“We Don’t Talk No Baby Talk Round Here!”

Reply to a Disgruntled Reader

Dear Friend Whom I Haven’t Seen Much of Lately

Letter to My NT (Neurotypical) Child

Or you might like “Excess Baggage” from Random Pearls of Wisdom.

And So It Begins…

The Right Moment

I knew it was coming.  So, it isn’t a surprise.  Funny how that doesn’t make it any easier.  Having seen relatives raise autistic children, I knew the time was coming when taking our son out in public would become officially difficult.  Up until now, I have been able to avoid the stares of others during my son’s tantrums.  He was still a baby.  Until recently, most people (including those who knew him fairly well) didn’t think he was so different than other toddlers.  Many of them were still making the He’ll Catch Up, So Quit Worrying argument.  But, as he is getting closer to three, it is becoming more obvious that he doesn’t talk, doesn’t play normally, and emits ear-piercing shrieks when life isn’t going his way.

I got my first Stares From People in Public Who Clearly Raised Their (Normal) Children Better Than Me the other day.  We went for our weekly trip to Publix and, for the first time, the cookie that the nice folks in the bakery gave Callum didn’t keep him happy.  He began to shriek.  And shriek.  And, just when we thought it was over, shriek some more.  And they all looked up and stared.  That stare that speaks volumes and says, “I’d tear his little butt up and shame on you as a mother for not having done it already.”  I looked around, and then I knew.  The days of blending in are over.  We are about to become the family that is a pain to have around.

A couple of days later, my best friend Beverly arrived from Vermont.  We hadn’t seen each other’s kids in over two years.  We took them to a park.  And Callum wasn’t happy.  We took them to Wendy’s to lunch.  And Callum threw everything within reach off the table.  And shrieked for a chicken nuggett – pretty much the only thing left that he will eat.  Yep, those days are here.

I’m not ashamed.  But I’m sad.  I’m sad that he doesn’t know the joys of playing with others.  I’m sad that my four year was so desperately happy to have a playmate who actually played with her.  I’m sad that I couldn’t sit down for a few minutes and enjoy my friend without following Callum around, who is always busy AWAY from where all the other children are grouped.

But then he found the hammock.  I put him in it, and he just melted with satisfaction.  And I got some cool pictures – the rare kind that you can’t ever seem to get with a child with autism.  Ones with genuine smiles that highlight the little souls we love so, so much.  So, for Thanksgiving, I am thankful for hammocks.  Hammocks under canopy trees in perfect, breezy weather.  And cameras available in The Right Moment.

And for Callum.  I cannot imagine life without this precious little angel of a boy.