Category Archives: Letters

There’s Still Time: Love and the Autistic Child in Your Life

windowOnce upon a time there was an autistic child. He wasn’t “easy.” He didn’t talk like the other children in the family. He didn’t play the same games. He wasn’t interested in going to the same places — hot festivals, toy stores, and noisy restaurants. His family loved him, but he often wasn’t included. He wasn’t invited for sleepovers. He didn’t get the same special outings as his siblings or cousins. Initially, he didn’t notice. But as he grew older, he did. When they came by to pick up his siblings, he wanted to go too. When everyone left without him, he stood at the window and watched them drive away. But his family believed his parents understood– that he was too much to handle.

But he wasn’t. He was a joy. The outings he enjoyed were simple — rides in the car, trips to the grocery store, splashing in the pool, playing in the mud, swinging in the park. But, for whatever reason, he was never invited to do any of those things – the things he could do and enjoy — and kept being passed over for the children in the family who, presumably, were more fun to spend time with.

He continued to learn, develop, and grow. Eventually, he knew. He knew he was different. But what he didn’t know was what the family had assumed he would — that  he was loved equally. That’s because love isn’t what’s declared. Love is what’s done. It’s easily identified in any language – or lack thereof. And when dispensed unequally – and obviously — it denies both the receiver and the giver.

He knows. You know.  And there’s still time to do it differently.

Flappiness Is on the Huffington Post!

I submitted this to Huffington Post — and then decided they must not have liked it, jumped the gun, and posted it here a few days later.  Today, HuffPostParents published it!  (Which was a real thrill.  It’s been on my Writer Bucket List.)  So -just  in case you missed/understandably ignored my email – here’s my latest.  😉

 

Dear Friend Whom My Autistic Child Just Rebuffed

callumtackleI know.  I saw.  You, friendly person that you are, walked up to my autistic child in public and tried to say hello.  And he got really, really upset with you.  I saw your concern.  Felt your embarrassment.  Knew you never meant to upset him.

When I see you, you ask about him.  When you’ve met him before, you always make a point of speaking directly to him – even when it seems he’s not paying attention.  You’ve even had really positive interactions with him in the past.  You did everything right.  You didn’t go rushing up or speak too loud to him.  You didn’t put your hands on him without being welcomed to do so by him.  You follow me on Facebook, read about the cute things he does, and celebrate his successes.  You’re a good friend and a great cheerleader.  I appreciate you.

And because of that, I don’t want your apology for “upsetting” him.  That’s because you didn’t.  It’s likely several things did, but it wasn’t you.  He was just overwhelmed a bit by the world – new sounds, sights, and experiences.  He was busy trying to process all of those when you happened to innocently walk up and try to interact.  For whatever reason, that’s when his pot boiled over.

He wasn’t judging you, disliking you, or even declaring how he feels about you in the future.  He was simply over capacity and expressed it the only way he knows how to – with a big fat “no more right now.”  Only he doesn’t yet have those words.  He isn’t able to convey exactly what was too much.  He meant to say, “I have had enough.”  But it wasn’t you.  It just seemed like it.  And I could tell by your red face that it felt like it too.

So, I’m begging you.  Please don’t slink away and give up on getting to know him.  Please don’t feel that he just doesn’t like you.  Please don’t feel like you did anything wrong.  He may have been overwhelmed emotionally and sensory-wise, but his mind is quick.  He knows the difference between someone who is good to him and someone who is not.  If you continue to gently engage with him when you see him, he’ll learn that you’re not to be feared –and you’ll learn there is nothing to fear from reaching out to him.  Before you know it, you’ll have a little buddy who expands your world – just as you will expand his.

I want you to know that your efforts to engage with my child are beautiful to me.  Too many people are afraid to try – afraid to “upset” him.  Afraid to simply ask what’s the best way to get to know him.  But you?  You put yourself out there and sent a message to our family, to him, and everyone in the immediate area – that he is worth knowing.  Not everyone knows that.  But you do.

And that’s why I want so very badly for him to get to know you.  Because clearly you are worth knowing too.

 

 

 

 

 

 

It’s Not Personal: A Special Needs Parent’s Apology to Everyone She’s Going to Upset

I'msorryDear [             ]:

I’m sorry.

I’m sorry to have ruined your day, angered you, or caused your supervisor to watch you closely.  I know what bad days, frustration, and job pressures feel like.  It wasn’t my intention to cause you problems.  It may not feel like that to you, but it’s true.

I know that –when you aren’t busy being the person I had to get unpleasant with –you’re probably a very nice person.  I’m sure that your family loves you, friends think you’re wonderful, and you’re an active church member.  If circumstances were different, we might be friends.

But the great person whom I’m sure you are intersected with a road I’m traveling to meet the needs of my special needs child.  To put it simply – you got in my way.  In some way significant to my child, you failed to do your job.  Do I think that makes you evil?  No, I think that makes you human.  But the issue isn’t how I feel about you.  The issue is a vulnerable little boy who cannot speak for himself – my vulnerable little boy.

There are a lot of reasons why you might fail to do right by my special needs child.  You may be overworked.  You may not have enough resources.  Your boss may be a jerk—or clueless.  You might not have the knowledge or time to do what is being asked of you.  Most likely, you are simply a part of an educational system that has been broken for so long no one knows what it is supposed to look like when it works.  Most likely, you probably already know that – but fear of rocking the boat or drawing parental attention caused you to go along with what you knew to be wrong.  You may feel helpless about that and wish it were different.  I’ll let you in on a secret – I feel the same way.

But feelings and wishes – over truth and action- are luxuries I don’t have.  I can’t blame it on the system, lack of money, or others and go about my day.  You see, this child is mine.  And you and I know all too well who will step forward to advocate for my child if I don’t – no one.  Not really.  They’ll think he’s adorable, sign him up for an hour of therapy or so a week, and set goals for him low enough for him to achieve in a year. They’ll finish his IEP in 15 minutes and tell themselves they’ve done their jobs.

But it won’t keep them up at night.  It won’t drive them to learn and do more.  They won’t feel a sense of panic as precious time is lost.  It won’t incite their indignation.  It won’t be their child, so…

It won’t be personal.

But his well-being is my purpose for being here.  Having made the decision to have and raise a child, he shot straight to the top of my priority list – even if he isn’t at the top of yours or the system you work for.  If you fail to make a call, provide a service, determine and meet his needs, allow him to be under-challenged, ignore his IEP, traumatize him in some way, or do him any kind of educational or moral injustice – then it’s my job to be there, draw attention to it, and make it right.

So, unfortunately, that’s where your path and my path have crossed.  I’m sympathetic to whatever caused you to be here.  But my job is incompatible with looking the other way while you don’t do yours.   No matter what the reason.  It’s just that black and white – even if it isn’t completely your fault.

This isn’t going to change anything.  I’m still going to be there.  I’ll still be watching closely.  I’ll be polite, but I will be that parent.  The parent who writes the letters, makes the phone calls, requests the records, researches the issue, analyzes the data, knows the law, and makes it her mission to know more about my child’s disability and issues than you or anyone you work with.  Which means there may come a time when his needs and rights are in conflict with your convenience, budget, or the status quo.  Again, I’m sorry about that.

But I want you to know– it’s not personal.

Update:  This post has touched a nerve with some folks who may not be familiar with my writing or blog.  This post is not anti-teacher.  Teachers aren’t usually the problem.  I know.  I AM a teacher.  Most are wonderful, including my son’s.  I’m talking today about the folks who make the real decisions that affect special needs students and their classrooms.  And, while I would never be rude with anyone, I can and will do whatever is necessary-within the law – to ensure my son receives what he has a right to under federal law. 

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. :)

If You Were Cured Tomorrow

Callum says "Cheese!" for the camera when busted "redecorating" his bedroom.

Callum says “Cheese!” for the camera when busted “redecorating” his bedroom.

If you were cured tomorrow, life would be easier for you.  You could eat without ritual, go anywhere without fear, and would understand everything being said – even when it isn’t being said.

If you were cured tomorrow, people wouldn’t stare.  Your play would not be questioned and corrected.  You wouldn’t feel compelled to move and shout and seek in the ways that you do.  You would sit in rooms where people talked to you instead of about you.

If you were cured tomorrow, I would ask you to explain so many things.

If you were cured tomorrow, you would gain better access to all those beautiful dreams we wished for you before we knew you.

But, if you were cured tomorrow, you would be a stranger to me.  Living a stranger’s dream.  And I would never get to see you live the dreams you have for yourself.

If you were cured tomorrow, my worries would be eased — but my heart would be broken.

Because I love you.  You you.  Not some hypothetical you.  Not the you you might have been had you not turned out to be you.  It’s all very complicated.  And it’s all very simple.

If you were cured tomorrow, I’d miss you.

 

Dear Relative: What Are You Waiting For?

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? 

Dear Superintendent of Schools

Mrs. __________’s Note Home

 

 

 

 

 

 

 

To:  The Superintendent of Schools
Subject:  Mrs. __________’s Note Home
CC:   Mrs. _____________, the School Principal, the Director of ESE, school district administration, all School Board Members
BCC:  Flappiness Is, Facebook, Twitter, the Internet

Dear Superintendent:

Congratulations on your recent election to the office of Superintendent of Schools for our county.

I know that you have been in office just a few days.  And I am positive that right now everyone wants something from you, questions answered, or to elicit your support for their personal concerns.  I am happy to say that I do not need for you to do anything for me.  Well, not at this time anyway.

What I would like to do is draw your attention to one of the 9000 employees of your district.  Her name is Mrs. _____________, and she teaches at ________________ Elementary.   Mrs. ___________ is my son Callum’s teacher. Continue reading at Childswork/Childsplay Blog…

 

 

Dear Morrissey: What Rings True

If you haven’t  seen the story in the news, here’s a little background.  The Duchess of Cambridge (formerly Kate Middleton) entered the hospital with a condition of pregnancy called Hyperemesis Gravidarum.  (I wrote about Hyperemesis just prior to the pregnancy announcement by Prince William and Kate.)  An Australian radio show then decided it would be amusing to prank call the hospital and attempt to get private medical information on the duchess.  They succeeded.  Shortly thereafter, the nurse who they duped committed suicide.   Morrissey, a British musician, decided to weigh in on the media circus with his own opinion. 

Dear Morrissey,

Recently, you made disparaging comments regarding the Duchess of Cambridge’s bout with Hyperemesis Gravidarum and her hospital nurse’s suicide. 

“There is no blame so far placed at Kate Middleton, who was in the hospital, as far as I could see, for absolutely no reason.  She feels no shame about the death of this woman. The arrogance of the British royals is staggering. Does she have a health condition? Is it anorexia or is it pregnancy? So much hoo-ha and then as soon as this woman dies she’s out of hospital? It doesn’t ring true.”

Mr. Morrissey, I am not a “royal watcher”, nor do I have any prior opinion of you whatsoever.  What I am is one of the 1% of women affected by Hyperemesis Gravidarum – a condition you clearly know nothing about.  Yet, despite your obvious ignorance of the subject and your lack of access to the Duchess’ medical records, you have decided to place blame on her for the suicide of a woman she doesn’t know?  Really? 

Since you have not taken the opportunity to educate yourself before this somewhat sad attempt to gain attention, I would like to take a moment to address your commentary.

  1.  Hyperemesis is not anorexia.  Pregnant women of any size can suffer from it.  During both of my pregnancies, I was more than 50 pounds overweight.
  2. Hyperemesis is a “health condition”.  It is not, as you appear to assume, simple morning sickness.  It is an extreme form of nausea and vomiting that causes dehydration and can lead to kidney failure, pulmonary embolism, and even death.  (Charlotte Bronte is thought to have died from the condition.)  It is a condition that, if not able to be eased medically, sometimes requires terminating the pregnancy to save the life of the mother.  That is rare, but it happens.  For that reason (and for the health of both mother and child), it is vital to rehydrate the mother and provide her with intravenous nutrition until she is capable of holding down food. 
  3. A typical hospital stay for an acute case of Hyperemesis is between one to a few days.  It is rare for a woman to be hospitalized for the duration of her pregnancy.  Usually, the hospital puts in an IV and administers and antiemetic (such as Zofran) until the mother is rehydrated and the vomiting under control.  Then she is released.  Often, continuing antiemetic medications is enough to keep her from becoming

    A PICC line

    dehydrated again.  Sometimes, it becomes necessary to administer a PICC line for the remainder of the pregnancy to deliver nutrients and hydration.  To attempt a correlation between the nurse’s death and the Duchess’ release is both ignorant and cruel.  The length of her hospital stay was quite typical for Hyperemesis. 

  4. You denigrate the Duchess for not feeling shame.  Why should she be ashamed for becoming ill?  She didn’t make that phone call.  And, having had the condition myself, I can assure you that she has little opportunity to process the event in between gagging and retching.  How was she supposed to predict such a series of events? Does her celebrity negate her right to hospital care? 

The only arrogance I can see in this situation, Mr. Morrissey, is yours.  Having checked out your biography on Wikipedia, I can find no evidence of your medical training.  And, considering your scathing indictment of the Duchess, I suspect you are not well-acquainted enough to be privy to her personal medical file.  Therefore, I believe the only thing that “doesn’t ring true” is your ill-conceived opinion.  Unfortunately, you have already done some damage.  There are people out there who will read your comments and assume this condition is not real.  Instead of doing good with your celebrity, you have chosen to publicly invalidate an already little-recognized, under-researched, and dangerous medical condition affecting thousands of innocent women and their babies.  I would suggest there are greater uses for your fame than this.

Sincerely,

Flappiness Is

 

As You Are: An Open Letter to My Son

Callum planting one on his pesky big sister for the very first time.

Today, I am honored to be guest posting on Childswork/Childsplay.  Some of my favorite bloggers are regular writers for Childswork/Childsplay, so I was thrilled to be asked.  :)

And, if you will be so kind as to remember Callum in your thoughts and prayers, I would greatly appreciate it.  He is hospitalized right now for abdominal pains and tummy troubles.  It’s been a long night for us both and hard on this mama’s heart to watch him suffer.  

Please click below to read the entire post.  

Dear Son,

I don’t know if you will ever be able to read this.  I don’t know that one day you won’t be able to read books of all kinds and share your thoughts with me.  You are only three years old and are mostly non-verbal.  You are autistic – which means you are affected by a neurological condition that impacts communication and processing.  At this point, much of your behavior is influenced by autism.

But here’s the thing.  Every human soul enters this world with a personality that is unique.  And, although you certainly will change between infancy and adulthood, the part of you that is you is apparent from the start.  Yes, autism is an inseparable part of who you are.  But it isn’t all of you, baby.

Most children are loved by their parents.  That is the birthright of every human being.  But not every child is liked by her parents.

Continued…