Monthly Archives: March 2012

“So, I guess I’m writing this now to tell the autistic people who are reading this that I, too, am not your enemy. I am not afraid of autism; I do not hate autism, and I can help bridge the gap between our two groups. I want to learn from you, and I want to stand beside you as you fight for your rights. You are my child’s future and I want to help you as you make the world a better place for yourselves; and for him.”

-Jillsmo (on the contentious and painful growing divide between autism self-advocates and parent advocates)

If you like this quote, you can read the entire post here:  “Let’s Talk Some More About Cookies”

Confessions of a Former Book Snob

I have always been a reader.  I read my first non-illustrated juvenile paperback novel in the end of first grade.  It was some kind of a mystery involving danger and a treehouse.  I loved being sucked into another world.  And I would often, during required nap time, lie awake and make up new stories for beloved characters.  By the time I entered middle school, I was devouring a teen novel or two a day (usually 80s series books like Dark Forces, Twilight – not THE Twilight, and Sweet Dreams) before moving on to popular adult fiction.  I loved reading and writing and couldn’t get enough.

When I was still fifteen, I was moved out of a standard English class and was bumped up a year into AP English Lit – skipping over the AP class offered to juniors.  I was petrified walking into that room full what would be that year’s honor graduates and valedictorian.  I sat down and listened to the teacher’s discussion with the class, both mesmerized and trying not to look stupid at the same time.  And then she passed out Richard Wilbur’s poem “Death of a Toad” and asked us to “explicate the metaphorical relationship between that of modern man and the toad”.

A lot of folks would find this torture.  But me?  I was instantly hooked.  I loved taking the author’s words apart, finding relationships between ideas, and seeing the not-at-all accidental uses of figurative language.  The genius of classic authors and their works enthralled me, and I was soon reading such works as The Sound and the Fury, Invisible Man, and Beloved without being assigned to do so.  And, like many avid readers, I was hoping that somewhere within me was a great novel yet to be written.

I went on to major in English Education and then to teach middle school English for five years before getting my media specialist certification and taking a position in a middle school library.  Yep, I’m a card-carrying book pusher.  I love matching people with just the right book and am the annoying aunt who gives books for gifts.  I also moderate an online reading group of about 100 people.  So, I have some of the training, degree, and professional credentials to be an official book snob.

They do say confession is good for the soul.  So here is where I am going to do the Literary Walk of Shame.  Go ahead.  Ask me what I’ve been reading for the past six or seven years.  Fine.  I’ll just say it.

Fluffy paperback  mysteries, science fiction, and romance.    And, yes – though I cringe somewhat to admit this –  paranormal romance.  Vampires, werewolves, and the like.   Some of you who read more worthy literature may be disappointed in me, I know.  But you know what I like about these books?  There’s always a happy ending.  I don’t have to worry that the author is going to slip a tragedy in on me.  I can laugh at witty dialogue, chew my nails at the scary parts, and simply immerse myself in a bit of literary escapism.  Sure, characters in paranormal fiction certainly do get eaten by otherworldly baddies, but I have no real concerns about seeing such a thing repeated in real life.  I like my fictional tragedy to be of the improbable variety.  And, in defense of authors of “mere genre” fiction, some of them are quite good storytellers who write simply to entertain.  I now happen to think that is a perfectly noble aspiration, prior book snobbery aside.

There.  I’ve said it.  I’m hoping the university will not catch wind and revoke my degree.  😉

So why have I turned to the dark side and read only fluff?  It’s simple.  I find I can no longer read serious literature.  It’s all so tragic.  Abuse, suicide, genocide, war, terminal illness, child loss, and on and on.  Misery compounded by misery.  It’s simply too much pain to process when I am so busy trying to process my own.  The last respectable works I read were The Kite Runner, Room, and The Book Thief.   Surely you see my point. Yes, they were brilliant.  Yes, they were thought-provoking.   And, yes, there are lines from these novels and the like that still haunt me in the horrible beauty they convey.  I can still discuss great novels at length, analyze the symbolism within, etc.  But I cannot handle reading them anymore.  It’s just…too much.  Too much everything.

A few years ago, a very dear friend of mine lost her teenaged child in an accident.  Shortly after, my stepmother died of cancer — following five short months of suffering and all-too-early goodbyes.  Ten months later, I gave birth to my first child, an experience that – as every parent knows – suddenly clarifies much about life, death, and what really matters.  And then, 19 months after that, we had our sweet son – whose autism has also taught me much about love, acceptance, hope, and grief.

In just a few short years, I have witnessed and experienced enough of the true highs and lows on the roller coaster of life that I find I cannot willingly subject myself to taking those rides with people who do not even exist.  So, I don’t read drama.  Period.  For me, there is enough real drama in the world already.  Nor do I watch drama.  Ditto for most reality competitions.  No matter how talented they are, I find can’t stand watching some kid’s dreams shattered.  And why some folks choose to willingly demean themselves and others on cheesy reality television is beyond my comprehension.  I guess one should just be grateful they don’t have anything more pressing to concern themselves with.

I know that what fiction one chooses to read and what shows are programmed into her DVR aren’t terribly significant.  Except that they are yet another sign of the small ways that profound experiences can change you.  I am still myself, yet another version of me.  And, though there have been many experiences in recent years that have shaped the Me of Now, I find that becoming the mother of a special needs child is the most life-changing.  I see the world differently.  I have more patience for people, but less tolerance for the drama they inflict upon themselves.  I have more compassion for myself, but I question every move and choice I make.  And, although the joys I experience are deeper and more meaningful than before, I now see in my own eyes the subtle expression just under the surface of so many parents whose children are born different and therefore vulnerable  in a not-so-understanding world.

I am me.  But I am not me.  And I am not at all certain how many more versions of myself are yet to emerge.  Yet I guess that is what life is about — change and adapting to change, over and over again until the ultimate change.  I hope I get better at it, seeing as how there is no choice and all.

And, in the meantime, should you encounter me in the bookstore – ducking behind some vampire book display and hiding the covers of my selections from the wandering eyes of absolutely no one – try not to laugh at me.  Clearly, I still take myself way too seriously.  😉

Now, I really must go and find out what Alexia* is up to and if it will involve traveling with her werewolf husband on a dirigible on her way to do battle with neer-do-wells.  With any luck, it will.   Sometimes a temporary escape from reality is all you need.

“Books don’t offer real escape, but they can stop a mind scratching itself raw.”
― David Mitchell, Cloud Atlas: A Novel

*Faithless by Gail Carriger

In what ways have you changed at the parent of a special needs child? 

If you enjoyed this post, you might might like:  “Why I Won’t Be Getting Mother of the Year: Layers of Understanding”

8 Reasons Why My Dad Is Autism Grandparent of the Year

The nice thing about having your own blog is that you get to declare things with no oversight committee.  So, today I am declaring my father – 2012 Flappiness Is Autism Grandparent of the Year.  

Being the grandparent of a child with autism can’t be easy.  On one hand, you are worried about your grandchild.  On the other, you are worried about your own child – the mom or dad.  You want to help, but you don’t want to interfere.  Or maybe you do — in which case you will end up on an altogether different kind of post.   😉  

My dad is awesome.  And, since he never toots his own horn, I’m going to do that for him.  So, Dear Reader, please allow me to share with you the eight reasons why he wins:

1.  He has never – not even once – unburdened himself on us about his own fears or grief.  He is wise enough to understand that we have all we can handle of our own.  I am sure he worries, because I know he loves his grandson.  But he has rightly concluded those feelings are best shared with others.

2.  He does not presume to tell us what we should be doing with regard to raising, educating, or providing treatment/therapy for our son.  He listens to me discuss it — at length – but just nods and says something to the effect of “Alright.  That makes sense.  So where do we start?”  If I ask his opinion, he’ll share it.  But, otherwise, he merely supports what decision we have made.  I haven’t asked him why he is so good about this, but I suspect it is because he trusts me to have researched a topic to death before arriving at a decision and that he thinks I have good judgment.  I really appreciate that.  And, because of that, I seek his counsel more often.

3.  He doesn’t get upset when we inadvertently forget something.  He knows our days are busy and our stresses many.  He knows that therapy and specialists cost a lot of money.  And he doesn’t get the least bit upset when we find it necessary to do a “just buy gifts for the kids” kind of Christmas.  He’ll tell you that us forgetting things just buys him another “get out of jail free card” for when he forgets something.  But, humor aside, he doesn’t sweat the small stuff or attempt to test our affections.

4.  He stays in the here and now.  Because he knows it is too early for predictions, he doesn’t ask for them.  He doesn’t pester us with “Well, does the therapist think he will talk one day?” or “When is he going to ______?”  These types of questions not only cannot be answered at this time, they also cause us a great deal of anxiety.  I’m sure he wonders as well, but he doesn’t burden us with it.

5.  He doesn’t bat an eye at the disaster area that is our home.  Not even once.  My dad has seen the crumb devastation our little human wood chipper wreaks when eating, his penchant for writing on walls, and his love for testing the properties of gravity with all living room objects.  So my dad just clears a spot and settles in for the visit.

6.  He doesn’t place guilt on us for the things we choose to decline – like parades, chaotic birthday parties, or piano recitals.  He understands that there are some things we just don’t want to do with Callum and that there are some things Callum just doesn’t want to do period.

7.  He has never attempted to deny there was a problem.  Even from the beginning – when others were saying, “He’ll be fine” and “He’s just a boy”,  he never silenced my fears by suggesting that nothing was amiss.  As nice as it is to be reassured everything is okay, it doesn’t silence your intuition.  My dad is great about acknowledging a problem without carrying on as if the sky is falling. People like that keep you grounded.

8.  He truly enjoys his grandson.  When he visits, he delights in the child Callum is right now – rather than adopting The Look of Tragedy every time he sees him.  It’s important for a child to not only be loved, but to be liked just as he is.   And, because he accepts my son for the wonderful little person he already is – rather than waiting to see who he will become – he is able to enjoy his uniqueness as well.  When Callum does something remarkable – something that can be attributed to autistic traits – he gets a kick out of it.  And although, like me, he worries about him, he also finds him fascinating.  That’s unconditional love, with the stress on — unconditional.  🙂

P.S.  And one more fabulous thing about my dad.  He subscribes to my blog and reads me every day!

So, who do you nominate for Autism Grandparent of the Year and why?

Siblings, Stress, and Love: A Big Sister’s View of Autism

This is a guest post by Leah Kelley of 30 Days of Autism.  Leah is a K-12 Special Needs Resource Teacher and blogs about her experiences both as a teacher and as the parent of a child on the spectrum.  I found Leah after reading her wonderful post Treasures I Found at the Thrift Shop: Autism and Understanding.  Leah also presents on issues regarding autism and literacy and has been published in reading/language educational journals.  I think Leah is a fantastic writer and advocate for our community, and I am so pleased to welcome her to Flappiness Is.  Today’s post specifically addresses a topic that has been on my mind since viewing Alicia Arenas’ TED Talk “Recognizing Glass Children” – a powerful talk about the hidden pain of siblings of special needs children.  Having a neurotypical child as well as a child with ASD, I have been giving this subject a lot of thought recently.  In this post, Leah shares her and her daughter’s thoughts on the sibling experience.  Thanks, Leah!

I have a beautiful daughter who will be 18 next week. Nika was almost 6 when H was born. He was like having a real baby doll and she was just awesome with him. Nika was precocious and very social: she talked early, walked early, and she was and is very musical, witty, articulate, academically bright, and strong-willed.

Tonight before dinner H was showing Nika the butterfly knife that he created out of Meccano, and his Villagio (our name for Value Village) leather jacket. (Lately H is working to emulate Mutt Williams – son of Indiana Jones from The Kingdom of the Crystal Skull.)

Nika said he looked like a small biker. Then she added, “Somebody once asked me if there was ever a Zombie Apocalypse what would you want to have with you? I replied with: A convoy of armored trucks and my little brother, because when all else fails he will find a way to make something useful out of the rubble and remains of civilization.“

The two of them then got into a hilarious conversation about how Nika would be the driver because H’s feet won’t reach the pedals, and laid out contingency plans, roles, and responsibilities in case of an actual Zombie Apocalypse.

This is a good place to be… and my policy is… when the going is good, sit back and enjoy, because it will get tricky again soon enough. I don’t need to go looking for tricky or troublesome – it will find its way to my door. I love this interchange because it is representative of the amazing relationship that is developing between my children. H adores his sister, and he misses her deeply and terribly when she is not around, and Nika is coming to a place where she is able to really see and admire certain qualities in her brother, and I see in her some budding advocacy tendencies. I like that!

Some of the best advise we had when H was diagnosed with autism was that it was important to understand that a sibling goes through the same process of grief that the parents do: shock, denial, anger and finally acceptance. I suspect that neurotypical siblings (NT sibs) can also feel guilt that they do not face the challenges of their sibling and/or that they have no right to complain or feel life is difficult. This is huge pressure for a child.

The lives of  NT children can be deeply affected as the entire family system works to accommodate the complicated needs their sibling with autism. It can be difficult for the NT sibling to express any negative thoughts without feeling like they might be terrible or not worthy of love. However, the feeling of being pushed aside is understandable and at times likely justified, and parents need to be open to the expression of this so they do not drive these feelings inward in an unhealthy manner.  It is understandable that an NT sibling might, at times, feel resentful. Life just got a whole lot more complicated.

It can be hard to be the sibling of a child with autism. It can be hard to have to tone things down and keep a calmness to routines because your mom is constantly watching and saying things like, “OK now… that was funny, but let’s not rev H up.” When you are excitable and full of life and fun, it is difficult to have to rein in impulse so that your parents are not stressed by your brother’s potential melt-down.

Painted by Nika

There have been times when H has said insensitive things and really hurt Nika’s feelings. There was an occasional time when he hit her, and many times when he has irritated her with his persistent talk about his present topic of interest. Usually – these have not coincided with Nika’s interests.

It can be hard to have the sensitivity to know that your parents are anxious and worried and that they have to focus so much time and attention to the newcomer. It can be hard not to want to set him up and see his wheels spin, and bug him to get back at him a bit for what you know your family is sacrificing… for what you may be sacrificing.

Nika was willing to help me with this post, but when I asked what she would like to share she said, “I don’t know… I don’t really think about it anymore. I am just so used to it.”

So I decided to interview her:

What is your earliest memory of your brother?

Laying at the cabin and reading him Little Rabbit’s Loose Tooth or some other book.

What do you remember feeling about him being different?

I remember that you always seemed busy with him and I felt pushed off to the side. You were busy taking him to tests or staying up late working on funding stuff. Sometimes you’d be so tired from dealing with him that when we got time to be alone together you would fall asleep. I understood but it was still frustrating.

What are your hopes for H as you see him get older?

I hope that he can live a normal life just like anyone else and that he can take care of himself and be on his own and be his own person.

What role do you think you might play in his world?

To be there for him if he ever needs anything. To be there to listen to him and give him advise. Just to be there when ever he needs me to do what ever I can.

What is your favourite thing about your brother?

He is fun to be around – It is always an adventure. He is just chill and laid back. We can hang out together and it is easy. He may not have advise for me but I can talk to him and he listens.

What has been a hard thing to get used to?

Just that he is slower to learn and respond and sometimes I forget that.

What makes you mad?

I don’t know… just when sometimes he seems to not be listening and it feels like it is on purpose, but it might be just that he didn’t hear me or it didn’t register.

Is there anything H has taught you?

He has taught me how to be strong, because I know that school is rough for him and he has always made it through and he seems to stay true to himself.

What advise would you give to siblings of a child with autism?

Tell the other child to be understanding and that it is not always easy. It is strange that no matter how mad you can be at your brother or sister – but if someone bothers them you are right up there to defend them. You may feel it might be easier to have a sibling that is so-called typical, but you love them and they are still your brother or sister either way and you love them no matter what they struggle with. I believe that having a brother with autism has made me a stronger and more rounded person. This has given me a better understanding of the many types of people out in the world that may seem like everyone else but may be struggling with challenges that we can’t see. So having a sibling that has an invisible disability has made me realize the truth and relevance behind the statement “you can’t judge a book by its cover”

Nika and H

You can cry – I might too…

My little brother is my best friend and even though it is sometimes a struggle I would not change him for any other brother or sister in the world. I accept him for who he is and I just hope that some day the world can do the same.

Thank you Nika, for sharing your thoughts, memories and insights. Love you honey!

If you enjoyed this post by Leah Kelley, you might also like:

Tic Tacs: A Light-hearted View of Autism Intervention

Coping With Anxiety: The Power and Message of a Parent’s Response

Mom, Tell Me What I Did Wrong: Autism and Social Development


Letter to My Special Needs Child’s First Teacher

Two years ago, my husband and I took our daughter school supply shopping for the first time.  Armed with list in hand, we searched for the requisite items, allowing her to pick out the colors and designs.  We were nervous about her first day.  I was emotional, wavering between excitement and pride and fear of putting my precious little girl into someone else’s hands.   We talked it up to her and made a big deal out it, allowing her to choose a special first day outfit and hair clips.  Then we walked her in to her classroom, helped her find her cubby and seat, kissed her goodbye, and left.  I teared up as I left, like many mothers – but knew in my heart all would be well.  And at the end of her day, we delighted in hearing from her about each and every new experience.

Last night, we made preparations again for her little brother’s first day of school.  We went to the store to buy school supplies.  Only, this time, we picked them out ourselves. My son, mostly nonverbal and autistic, doesn’t have an opinion about his lunchbox.  He doesn’t know his colors yet, nor does he express a preference.  He doesn’t even understand that he is going to school today.  This experience of The First Day of School is altogether different for us.  And at the end of his first day, he will not be able to tell us what he thought or how he felt.

In a couple of hours, we will-supplies in hand- walk him into a very big building.  In it will be hundreds of children who can follow directions, feed themselves with a spoon, are potty trained, and can – if frightened or in pain – express their needs.  My son cannot.  Yet I will be placing his tiny, just shy of three-year-old hand into someone else’s – someone who does not yet know and love him.  Someone who will not be able to understand the few words he has and the peculiar ways he attempts to communicate.  Someone who will not know how to soothe him when he inevitably gets lost in confusion and frustration.  I cannot begin to convey the bone deep terror I am feeling right now.  He is so little and helpless.  And it is such a very big bad world out there.

I met you last week at his IEP.  I tried to use every instinct I had as a teacher to get a feel for you.  My instincts tell me I made the right choice.  You weren’t assigned to him by chance.  Teachers know all about homework, and I did mine.  Yes, I shamelessly queried every connection I have made in my years in the school system to find just the right classroom for him.  You are rumored to be the best.  I can tell you that some mighty fine people whom I like and respect think very well of you.

Having done that, I now have to step back and let you do your job.  I have to trust in your experience and love for special little ones like mine.  Let me assure you that, though I feel confident in my choice of you as a teacher, this is the hardest thing I’ve ever had to do.  For, somewhere in your classroom – is a cubby with the name of the little boy who encompasses my entire world.

And though I am trying, there really are no words.

As a teacher, I know what you need from me.  I have been where you are.  And I want you to know I plan to support you.   I will take into consideration that you are a person – not a saint.  I know all too well how bone tired  you can be at the end of the day.  How hard child neglect and apathy can be to your mind and heart.  How critical the Powers That Be in Education really are.  I know how all of your planning time is stolen for stupid meetings and unhelpful consultants.  I know.  I do.

So, here is my pledge to you.  I am not going to make your life a living hell over the little things.  You are allowed to be sick, sometimes have to come up with things on the fly, have your head turned during a minor bump on the head, and even forget a note home or phone call.  You aren’t superhuman.  I pledge to not expect perfection from you.

In return for this, I would like something from you.  I would like you to remember that this little boy is mine.  I would like you to remember- when he is being difficult – that he cannot speak for himself, cannot share his fears, desire for mommy and daddy, and confusion over the new expectations placed upon him.  I would like you to remember how fragile and defenseless he is while learning how to navigate this world.  I would like for you to grow to love him for the sweet, loving little boy who cuddles with me and holds my hand each night.  I know that, having chosen to do what you do, you already know these things and have already made that committment.  But, please -on the most difficult days that all teachers have – remember you are holding my world in your hands.

Thank you for your sacrifice.  For, though we both know the rewards of teaching are many, I know the time, dedication, and expense you put into it –for little pay and a great deal of hassle.  May you be blessed with patience, love, determination, optimism, realism, and the stamina that I know is required to do what you do well.  If you need anything at all, please pick up the phone and call.  For I know for certain that, in this sacred trust, I am calling on you already.

If you liked this post, you might also enjoy:

Letter to My Neurotypical Child

Letter to My Autistic Child

Apology from Your Child’s Former Teacher

Dear Friend Hesitant to Interact With My Special Needs Child

Dear Friend Hesitant to Interact With My Special Needs Child:

I know my child makes you nervous.

It’s okay. Really. I still love you.

Knowing you to be the good and kind person of whom I am fond, I know the lack of interaction with him isn’t deliberate.  You are simply afraid, not of him but of doing something to upset him.  I have had this same fear in being around other people’s special needs kids in the past, so I get it.  I do.  But it makes me sad that you may be holding out and miss getting to know my sweet, precious little boy.  Because he is truly worth knowing.

One of the great wisdom statements about special needs children is that it is important to remember that they are first –children, followed by their special needs.  But I know that many folks, you included, see my child and see his special needs first.  And, I can’t blame you.  He is certainly different.

But, really, he is just a little boy, three years old.  And, though he is autistic and differs from typical children, it doesn’t change the part of him that is, first and foremost, a child.  Those of us who have, love, or work with special needs children get this.  But as my child has grown and his needs have become more evident, I have noticed well-intentioned family, friends, and acquaintances such as yourself struggle with how to interact with my son.

When my friends meet him – and aren’t sure how to engage him – it usually goes something like this:

“Will he get upset if I…?”

“Is he doing this because…”

“But he is so _______!  Are you sure he’s autistic?”

I know you aren’t avoiding him because you find him repugnant.  You are simply hesitant.  You don’t know where to begin.  And you probably feel guilty about it.  You may feel that stress come over you when you see him – wanting to interact with him like you would any other child, but fearful of saying or doing the wrong thing.  It probably doesn’t help that you once saw “Rainman”.   So, you ask questions but hold back, unsure of what to do.  I know you want a clear picture of him – a kind of map to guide you in interacting with him.  And that’s where I can’t completely help you.  Because getting a clear snapshot of a child with special needs is a very difficult thing.  Hence all the specialists.

I have used my three lenses analogy before, as it seems to make the most sense to me.  Often, I try to figure out what is going on with my son and find myself asking, “Which is at play here?  Autism?  Typical Toddler?  Or just Callum?”  I drove myself crazy doing that, trying to break him down into parts in my quest to figure out how to best help him.  And finally it hit me that I cannot analyze him in terms of one or another.  For he is all three.  He is at once a 3-year-old, an autistic child, and himself – Callum.

It’s like trying to take a picture with an SLR camera.  Normally, you can simply point and shoot and get a pretty good picture.  But, if you are in dim lighting, or there is a great deal of movement or distance, you have to use special settings and special lenses to filter and enhance the image.

Trying to figure out what motivates a special needs child can be complex.  To get a picture of that, you need three (or more) lenses.  You need the original camera lens itself to take a simple standard picture.  Then you need a second lens that filters for special needs – autism, Down Syndrome, etc.  You might need, depending on how many special needs conditions the child has, several such lenses.  Finally, you need a lens that enhances that child as an individual.  Because, like everyone else, special needs kids have their own temperaments, interests, fears, etc.  So, to get an accurate picture of a child with special needs, you have to take a picture with all three lenses at the same time.  For if you remove one of the lenses, the picture does not reflect the true child.

The problem is that some of the lenses we need still haven’t been invented.

So what do I say to my friends who honestly want to get to know my son but are hesitant about doing so?  It’s really simple.  Just ask me about him.  I’m all too happy to help you connect with him. I’ll tell you all about him.  Feel free to ask me what he likes.  How you might best make a favorable impression.  What might upset him.  And, then, just go for it.  Visit wearing comfortable clothes and get down on his level.  Take an interest in what he is doing and attempt to join him.  He’ll notice you.  Pretty soon he will likely begin interacting with you to some degree.  And, if you let him warm up to you, you might even get to roughhouse with him and get in some tickling and giggling.  He’ll love you, I promise.  And, if you are unwittingly doing something that might not be the best way of engaging him, I’ll be there to suggest another.  Soon, he may climb up on your lap. He will recognize you in the future and maybe smile when you walk in the door.  You will have made a special little buddy who will melt your heart.

And then you will have a clear picture of my child.  A child like every other –yet not.  A child who loves, laughs, plays, snuggles, fears, delights, and enjoys cookies as much as any other.  He may do all those things differently.  But he does do them.  And knowing him and forging a relationship with him will change both you and him for the better.  For not only is he worth you knowing, I happen to think you are worth him knowing.  🙂

Now, let me introduce you to my child.  I think you two are going to like one another.  🙂

If you enjoyed this post, you might also like:

Dear Friend Whom I Haven’t Seen Much of Lately

Why I Won’t Be Getting Mother of the Year: Layers of Understanding

Letter to My Neurotypical Child

The Place Where There Is Time for Everything

The Place Where There Is Time for Everything

Daylight Savings Time, known to our European friends as summer time, was invented for the purpose of extending daylight hours past the end of a normal working day.  This, in theory, is supposed to allow one to get a lot more done whilst one can actually see what one is doing.  I am one of those folks who actually likes Daylight Savings Time – not because I get any more accomplished, but because I find the immediate darkness of winter a tad depressing.

With the recent change to Daylight Savings Time, it occurred to me that, perhaps instead of merely joking about it, we should actually explore increasing the number of hours in one day.  Because there simply isn’t enough time.

A wise nurse practitioner once gave me her opinion of why so very many people are taking antidepressants these days.  She doesn’t think that people are getting psychologically weaker and just taking the easy way out.  She believes it is because the human brain was not intended to take on the level of stress – due to multitasking – that we load on it in our very busy society.

People once lived simply.  They got up – after a full night’s sleep.  Presumably, more folks had a good night’s rest due to the lack of TVs, video games, and other electronic distractions.  Some of you who have ever forgotten to pay the electric bill may have discovered this for yourself.  They ate breakfast – because the kind of work they would be doing required it.  Then they went about their day and worked – the physical kind.  Because physical work reduces stress, they worked out many of their frustrations.  Then they went home.  Where, because they didn’t have telephones, cell phones, computers, passive entertainment, etc., they passed their time actually talking to their families.  Connecting to their loved ones.  Discussing their difficulties.  Perhaps reading a book or writing a letter.  Before too long, it was dark, and they went to bed – repeating the cycle over again.

They were not jumping in the car, racing to take Child A to dance class and Child B to soccer practice.  They weren’t on hold trying to get their cell and TV service switched.  They weren’t filling out paperwork or online forms for the million things we must do each day.  They worked hard, yes.  Very hard.  But they didn’t multi-task to the extent we do today.  So, despite all that needed to be done in their lives, their tasks didn’t increase in complexity from one moment to the next.

Contrast that with today’s world.  In the course of my day, I arrive to work, observe the bells, teach, discipline, talk to parents, answer the incessantly ringing phone, order books, process books, utilize 4 to 5 completely different databases/software programs, email multiple persons, copy, scan, direct aides, assist teachers, proofread, talk to students, recommend books, and so much more.  I have no doubt that most of you experience days similar to mine.  All while keeping in the back of your mind who you have to call tonight, what meeting you must attend, which doctor’s appointment to go to, which items you must buy at the grocery store, your child’s band concert, the birthday gift you must order online, the reservations you must make, get an oil change, pick up prescriptions, etc.

It’s not what our minds and bodies were designed to do.  Please do not misunderstand me.  I am by no means a nature girl and would not be the least bit thrilled if you invited me to ditch it all and live on a farming commune.  I like the modern world very much thank you.  But it doesn’t mean this was what nature intended for me.  So, in that nurse practitioner’s view, antidepressants are helping people’s brains to adjust to unnatural circumstances.  And, while I personally am not taking antidepressants, I happen to think she is correct about the unnatural mental burdens of the modern world and the need for modern medicine to alleviate it sometimes.

I thought she was correct years ago when she first said it.  But now it is beginning to take on new truth.  Callum has been having six private therapy sessions and one Early Steps infant child development specialist session a week.  He has to return for a look at his ear tubes.  We need to meet with the doctor to discuss trying him on melatonin.  Which brings to mind the insurance fiascos I have been having and the three separate phone calls I am supposed to make to 1-800 numbers constantly busy.  I am supposed to meet with a CARD representative soon and follow up through the university regarding behavioral therapy.  Last week he was diagnosed by an out of town specialist and yesterday was his IEP.  We are supposed to model language at all times, keep non-engaged stimming to a minimum, train him to tolerate joint attention type activities for increasing periods of time, attempt to engage him with the books he is completely uninterested with, use PECS, engage him with the iPad, and on and on and on.  All this while doing all the parenting things we would already normally be doing for both him and his typically developing – though exhaustively precocious – 4 year old sister.  While I’m working full-time and my husband is working on his degree.

I am not complaining about parenthood.  I am so very blessed to have my beloved little stinkers and know it.  But I am complaining about the lack of hours in the day to get done everything that must get done and still have time to sleep, catch up with loved ones, feel like a human being.  I am complaining about the ever-increasing speed and complexity of our lives.  Because the world wants way too much.  It wants too much if you aren’t parenting a special needs child or being a caregiver in some other capacity.  But, if you are, all of those must-dos for a loved one who cannot do them for themselves build up into a cacophony of mental strain that can cause insomnia, depression, lack of immunity, and exhaustion.

In researching a university behavioral therapy study for my son, I found another study being done by the same department suggesting that depressed mothers complete less child interaction homework than non-depressed mothers.  It occurred to me that, perhaps, the depression isn’t causing less therapeutic homework.  Maybe those mothers are depressed because there aren’t enough hours in the day to do said homework.  I know that I wouldn’t likely be posting to you if insomnia weren’t aiding my writing time.  There simply aren’t enough hours in the day.  I have felt enormous guilt over the things that I don’t have the time or energy to accomplish.  The extras I can no longer take on at work.  The repeated requests to have to take time off to go to this meeting, that doctor, or whatever keeps coming.

And the hard reality is that the world is too busy creating new demands upon itself to worry about how we are keeping all the juggling balls in the air.

No, I don’t want more daylight with my hours.  I want more hours with my daylight.

Years ago, I read a poem by the Israeli poet Yehuda Amichai titled “A Man in His Life”.  It is about all the things we must do that we do not have time for in our limited existence on Earth.  I’ve read a few different translations* of it, but this one is the most beautiful to me:

“A Man in His Life”

A man in his life has no time to have

Time for everything.

He has no room to have room

For every desire. Ecclesiastes was wrong to claim that.

 

A man has to hate and love all at once,

With the same eyes to cry and to laugh

With the same hands to throw stones

And to gather them,

Make love in war and war in love.

 

And hate and forgive and remember and forget

And order and confuse and eat and digest

What long history does

In so many years.

 

A man in his life has no time.

When he loses he seeks

When he finds he forgets

When he forgets he loves

When he loves he begins forgetting.

 

And his soul is knowing

And very professional,

Only his body remains amateur

Always. It tries and fumbles.

He doesn’t learn and gets confused,

Drunk and blind in his pleasures and pains.

 

In autumn, he will die like a fig,

Shriveled, sweet, full of himself.

The leaves dry out on the ground,

And the naked branches point

To the place where there is time for everything.

* Translated from the Hebrew by Benjamin Harshav and Barbara Harshav

Video Worth Sharing: “Recognizing Glass Children” by Alicia Arenas

(You may have noticed that there is no actual video on this post.  That’s because I’m too cheap to pay the $60 my host requires for me to imbed it on my blog.  Don’t get me wrong.  I love WordPress.com.  They host hundreds of thousands of blogs for free, so you really can’t blame them for trying to make a little money.  But I’m too cheap, so you’ll have to actually reach for the mouse or trackpad and click.)  

Click to watch Alicia Arenas' TED Talk.

If you are the parent of both a special needs child AND a typical child, you need to watch this amazing TED Talk by Alicia Arenas – “Recognizing Glass Children”.  If you are a teacher or know a family with both typical and special needs kids, you need to watch it as well.  This is powerful.  It is about the psychology of being the sibling of a child with special needs and how it is in that sibling’s nature to pretend everything is okay inside – when it is not.  This clip is 20 minutes long, but it might just make a huge difference in the life of a “glass child”.   I’m so glad I saw this while my typical daughter is still so young.

Why I Won’t Be Getting Mother of the Year: Layers of Understanding

I used to believe that clarity was epiphanic.  As in, you don’t understand and then –presto whammo! –  you have an experience,  an epiphany, that brings about full insight and you are that much wiser for it.  I know better now.  Parenting a child with special needs is good for that, teaching you all kinds of lessons you never volunteered to learn.

I now know that understanding is multi-layered.  Clarity comes in concentric circles.  Just when you think you have come to a level of peace and acceptance, something occurs and you realize that there is a whole deeper level of understanding with which to contend.  This is how the painful and stressful stuff gets you.  It peels back another layer, and there you are again.  I’m beginning to understand this a bit better now.  Realizing that true understanding, acceptance, and sometimes grief are forever cycling, beginning again with each new layer revealed.   Comprehending that the things I am worried about now with regard to my special needs child will simply evolve into more complex facets of themselves.

A week ago, we took our kids on our first road trip to visit family in North Georgia.  It was a 8 hour car ride and things had been going quite well.  Callum was so easy-going, happy to look out the window, stim, babble, and giggle.  Bronwyn christened us into traveling parenthood with endless bouts of “Are we there yet?” – which, at four, is not unexpected.  I found an awesome classic country station on the radio and got my southern belle on belting out fun singalongs like “Living on Tulsa Time” and “Family Tradition”.  I felt normal.  Positive.  High-spirited even.

Just a couple of hours away from our destination, Sean and I decided to break for lunch.  We chose a McDonalds with a play area – determined to allow the kids some time to run their little legs off a bit.  And it was a really nice play area – sectioned off, indoor, safe, complete with tables and even a toddler zone.  Even the parents were all nice – smiling at others and encouraging their children to be careful with the littler ones.  It should have been ideal.

But soon Callum began attempting to climb up the main slide from the bottom.  He didn’t understand he needed to go up into the maze and slide down.  He was obviously too clumsy to do that anyway.  He climbed up a bit – and just sat in the middle of the “hamster tube”, partially blocking the children so anxious to get around him.  My husband and I were too big to crawl up to get him out, so we had to verbally encourage him to come down.  We directed him to the toddler zone, where his clumsiness became obvious.  He did figure out that he needed to climb the plastic ramp rather than the slide, but it took many tries.

Then a couple of sweet kids came up and attempted to engage with him.  He smiled in their general direction and backed into a corner, flapping away and making odd vocalizations and facial expressions.  And I saw, for the very first time, the strange expressions on the faces of those children – who were realizing there was something different about him.  They didn’t even back away.  Bless their little hearts, they again attempted to engage him before walking away, looking back curiously.  There was no malice, just an awareness of his otherness.

And then Callum took an interest in all of the tables nearby.  He started walking up to them, reaching for their food and drinks.  All of the parents waved away my apologies and smiled at Callum, flapping away.  Not one single soul rudely stared or showed any kind of disapproval.

But I noticed.  Oh, how I noticed.  I saw the future – Callum, so happy to be in the middle of such fun, yet not knowing how to join in.  These children, a bit older and less tolerant of his differentness.  The smiling parents, no longer able to dismiss his odd behaviors as being due to his age, relieved they aren’t in our shoes.  I saw the future in the past I have already (due to family and professional experience) seen before.  And it hurt.  One more layer of understanding revealed.  And the realization that there are so many more underneath, also waiting to be discovered.

All the while, my daughter was pressing her little face against the “hamster tube” sides calling out, “Mama, look at me!”  At one point in our concern to get Callum out of the maze, I lost sight of her and panicked.  Only to find her in a tube, making silly faces to get my attention.  A moment frozen in time —and yet another layer of understanding revealed.

I had to get out of there.  And, in doing so, I didn’t do such a great job of warning my daughter of our impending departure.  It was sudden, and she was having fun.  So, she threw the mother of all tantrums.  And, in her howls of protest, I heard all of the future injustices that will be perpetrated upon her.  When she needs our attention, but it must – by some necessity – be directed to her brother.  When she wants for all the world to have a special moment – to have it ruined by her brother.  When she actually realizes her brother isn’t really a baby and cares what her friends think.  I know she’ll survive it and be a better person for it.  But she, too, has hard times and lessons ahead.

Something in me broke amidst the chaos of that play area and my daughter’s screaming.  And I committed another injustice upon her.  In the middle of angrily trying to drag her out of there, I thought she had picked up another child’s toy and demanded she leave it behind – not realizing or listening to her crying that it really was hers, a toy from her Happy Meal.  I made her leave her My Little Pony on the table, desperately trying to escape that room.  I won’t be getting Mother of the Year for that. If it hadn’t been for my husband realizing I was unhinged and sorting it out, her toy would have been left behind forever – creating a memory I’d rather she not have.  (I don’t begin to know how single parents do this and survive mentally intact.  I guess, like all parents, you just do what you have to.)

In the car, I attempted to recapture the mood, but I could no longer find that station on the radio.

So I look around me at all the things I worry about now – communication, socialization, cognition at the preschool level– and am reminded that, with each challenge met and each new phase of development, that there will more and more layers of worry revealed.   Yes, he may develop speech, but will he know how to converse?  Yes, he may converse, but will he have friends to talk to?  Each concern will become more complex as he grows.  And I’m clearly going to have to do a better job of getting a grip.

For, unlike it is portrayed in books and film, clarity isn’t always patient enough to wait around for its owner to take out her journal, drink wine with a group of witty and insightful friends, or have an epiphany in the safety of her therapist’s office.  Sometimes clarity comes screaming up to you and knocks you over at the playground, the grocery store, or waiting for the light to change.  And there is nothing to do but reach in and remove the outermost layer, take a good look at it, keep calm, and carry on.  Somehow I’m going to have to steel myself to not flee from the playground.  Because, truly, the only person actually upset was me.  Worried about pain that has not yet come to pass – and in doing so – forgetting to relax, breathe, and simply live.  To not sweat the little things.  To climb up the slide backwards.  To crank up the radio. 

So this morning, on classic country, I hear Conway Twitty’s ragged baritone take on new meaning:

It’s the…soul afraid of dying – that never learns to live.  – “The Rose”

If you liked this post, you might also like:  “Letter to My Neurotypical Child”