Wednesday, January 30, 2013

The Calm Before The Storm

This morning serves as a good metaphor for the veracity of this life we lead.  In the distance, I hear the intermittent sounds of warning sirens.  The wind is rushing through the trees, bending the thin ones down in a show of submission to Mother Nature's power.  The taller trees standby as sentinels, yielding only their remaining leaves to the onslaught.  The clouds are a strange mixture of grey and the unseasonably warm air hangs heavy and resists giving itself away, not yet releasing the rain that will provide a return to the cooler air.

It all signals an unusually early beginning to tornado season in the South.

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My boy sits at home with me, kept from school today by a nagging cough and congestion that will allow him even less rest than his little body typically withholds from him.  He sits, curled up in the corner of the couch, the deep camel color of the fluffy cushions seeming to envelope his tiny little frame.  Luckily, I charged his iPad, which provides him both a happy respite and keeps him somewhat still, with the exception of the perpetual motion of his hands and feet.  In these moments, one almost forgets - until you hear him speak - that he has special needs.  He's just a boy - a sick little boy - curled up on the couch, making through a sick day.

There are silent battles on the horizon.  There is the annual renewal of Jack's Medicaid/Katie Beckett Deeming Waiver, of which I have submitted the first portion, knowing that the bulk of the work is yet to come.  There is a fight approaching for getting Jack's private OT services covered through Medicaid without his new IEP.  There is the meeting to set that IEP that has been pushed up several weeks so we can play this strange game of paperwork that Medicaid sets before us.

It signals an unusually early start to IEP season in the Reinventing house.

There are the everyday battles to get Jack to eat, walk, talk spontaneously, and to reach beyond the echolalia into speech that we can all understand.  There are the struggles to help him understand what we are saying.  There is the up and down of the roller coaster that we know so well.

Then, there are all of the silent battles - some little and some big - that have nothing to do with autism, but still permeate our lives.  There are those little struggles that become the straw on the camel's back at times.

For the moment, I sit adjacent to my boy and see the calm before the storm.  His little foot taps the side of my leg in a regular pattern that he maintains so that his body is always partially in motion.  His honey-colored hair and eyes catch a flicker of light from screen of his iPad as he plays with a peaceful intensity that he mastered long ago.  He finds calm in the hyper-focus, and that calm can be seen with the way he relaxes against the cushions.  While he's congested, drippy, and coughing, he's also at peace.

While sick days create endless problems - missed class, missed therapy, and sometimes behavioral issues - illness seems to bring calmness and stillness to my boy.  There is a sympathy you feel for your child's state of health in these times, but you also have to appreciate those moments when he is too tired to run away.  Sick days create a day to sit and watch my boy, held still by his lack of energy, and enjoy the brief opportunity to be near him.  I can take my time marveling at the wonderful little person before my eyes.

I know that the storm is coming.  I can hear it on the horizon.  Tomorrow will once again bring the challenges of a world that sits in such opposition to my boy's unique neurology.  For now, that storm is being held momentarily at bay by a quiet sick day at home and a lack of energy; we have put the world on hold for my boy's illness.  While I hate seeing him feel sick, the calm and peace that comes with illness and lethargy has to be appreciated for the strange way in which it stands in contrast to our usual reality.  It is one of those blissful moments in which I close my eyes and ask everyone and no one...

Please make my baby well, but please don't let this calm end.

Tuesday, January 29, 2013

Chores and Responsibilities

Today's is a short one, friends.  That's what happens when you have a kiddo who has been coughing all night.  Fingers crossed it's a mild cold and not the crap that has been spreading around his class...

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I believe that all children - regardless of their abilities - should be given the responsibility that comes with having chores.  That may be my Southern upbringing coming out, as I always had chores as a child.  My chores typically consisted of vacuuming and (sometimes) dusting the house, but it was something I was expected to do.  It was well within my abilities to do so.

Sometimes people are taken aback when I tell them that Jack has a chore.  It's as though Jack's challenges should preclude him from having to do any work, which I simply do not believe.  I believe that disability should not remove an individual from all responsibility, but that responsibilities should be tailored to the abilities of the person.  In a way, I feel that giving Jack a chore tells him that I think he's capable.  Having expectations of him helps him know that I think he can do it.

Now, I'm not saying it's easy.  I'm not saying that I don't have to assist Jack with his chore, but he knows that I expect him to do it.  He is not allowed to have free play on his iPad until he does.  Using his iPad as a reward, he typically is willing to do his chore.

So, what would be an appropriate chore for an autistic child Jack's age (nearly 4), you ask?  Jack's chore is feeding Mason one of his daily meals.  I think it's a good chore for him because he is not only sharing in the responsibilities of the household, but he is also taking a direct role in the care of another in our home.  For a child like Jack - someone who is so dependent on the world for his care, for feeding him his meals, and for his basic needs - being able to help care for another, even his dog, is very empowering.

The other thing I like about Jack feeding Mason is that it works on those ever-challenging motor skills.  Jack tends to hold objects limply, letting his hand hang at his side and spilling the contents of whatever he holds.  It's been one of the aspects of Jack's dyspraxia that has affected so many abilities of his, including self-feeding (you can't feed yourself if you can't hold a spoon upright), pre-writing (Jack is still learning to scribble), and strength (Jack's grasp is very weak).  When I scoop a scoopful of food for Jack to put in Mason's bowl, I make him carry it the 4 foot distance between the food bin in the laundry room and the bowl.  That's just long enough to challenge him and give him practice while not fatiguing his hand.

I'm not saying there aren't problems.  In fact, Jack spills often.  When he does, he has to help pick the pieces up and put them in Mason's bowl (I help with this).  I have to give Jack gentle tactile reminders to keep the scoop up and hold it level.  When he spills - even repeatedly - I still have him do the same thing the next day.  Why?  Because it shows Jack that I believe - I know - he can do this.

I'll tell you this, if Jack can have a chore, your child can as well.  I promise.  It may be small.  It may be as simple as putting a cup on the counter or even simpler - putting a single toy away with your assistance - but your child can do it, if that is something you wish to introduce.

I believe that - with so many things - Jack will strive to meet the standards I set for him.  If I give him no responsibilities and I perpetuate the belief that he's not capable, then he will live up to that standard.  However, if I give him responsibilities and encourage him and help him when needed, I am letting him know that I know he can do it.

They can do it.  Our kids can accomplish great things.

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Please share...do your special needs children have chores?  What responsibilities are shared amongst the littlest members of your family?

Monday, January 28, 2013

Different

I unzip Jack's coat and hang it - along with his backpack full of diapering supplies - on the hook in the hall.  I'm painfully aware that he's the only one in here still in diapers, but I let it roll off my back.

He enters the room and sees his aide.  He breezes past a little boy that he knows.  While he doesn't play with him - or any of the kids, for that matter - he does know his name.  In a way that is so uniquely Jack, he pauses, begins to flap his hands vigorously, and says the boy's name.  He doesn't make eye contact with him and he draws the name out, putting force into it as he speaks.  He's smiling.  As he does when he can correctly - and spontaneously - identify anything, be it person, a letter, or the weather, he is intensely proud.

As am I.

When I look at the boy, my heart sinks a bit.  He's giving Jack a look that says, Really?  You have to do that here?  Don't act so...weird.  He doesn't verbally acknowledge Jack and wanders off to join the class as Jack breezes over to the letter puzzle that he always plays with here.

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The past couple of weeks have provided me a stark contrast to the previous couple of years.  Adults have been able to tell that Jack was different, but usually (not always) adults can temper their responses into something more appropriate.

Children, on the other hand, lack that same filter.  Sure, in the past other kids would stare at Jack when he squealed or had a meltdown, but it seemed reasonable that they would do so.  Just as they would do in hearing any loud noise, a child will turn and look at something that is making a ruckus, including my son.

However, over the past several weeks I've noticed the reaction of other children to Jack and how it has evolved.  In reality, I know it morphed to this point before now, but I just was trying to not see it.  In a way, I was trying to justify their reaction.  If Jack could only play at their level - if he wasn't still playing with infant toys, lining things up, and pacing - they would be willing to play with him, but he's not, so his play doesn't appeal to the other children.  That has to be the answer!

It's not Jack's fault, though.  He shouldn't be required to conform to some mold in order to be worthy of attention from the other children.  He's perfect just as he is.

No, Jack's play skills haven't improved, but I'm starting to see a more vital truth - other children consider Jack to be different.  Some have verbalized it to me:

"Why doesn't he talk?"

He does talk a little, but he's still learning to talk and talking to other people is hard for him.  That's okay, because some things are hard for him but he's really good at other things!

"Why does he do that?"  (in reference to Jack flapping his hands)

Because he's happy!  He gets so very happy that his whole body shows it!

Usually those answers satisfy curious kids.  It's become more than just curiosity over delayed speech or stimming, though.  It's starting to look like isolation and avoidance.  The other kids don't speak to him or try to engage him, except to scold Jack like a baby.  If Jack tries to wander away or break the line, I'll hear them snap "No, Jack!"  When they go play, no one even looks at Jack anymore.  The other boys go off in a pack congregating around the sandbox or tricycles, while Jack paces or puts rocks down the sewer grate.

Blissfully, I think Jack isn't really aware of this or he just might prefer it this way.  I think he would rather be left alone.  He doesn't want to interact and would just rather avoid it, but it makes me wonder what will happen if - or when - he decides that he wishes he had a friend.

Perhaps Jack's friends will be children more like himself.  He's always seemed more comfortable around - as in not actively avoiding - a little boy at the clinic who has Down Syndrome.  Perhaps he'll find camaraderie and friendship within his own community of Autistics as his ages.  Maybe that sense of community will help him feel like he belongs, if not opening his world to friendship.

I want my boy to know that I will always think he's the greatest person on Earth regardless of what the other children think.  I want him to see home and Mommy and Daddy as being a safe haven - a place where he can be himself without fear of judgement.  A place where the flapping is embraced and not shunned.  A place where language doesn't bear the same weight that it does in the real word.  A place where experience and being speaks louder than words.

I can't change the whole world.  I can't change the other children.  I can't force them to see Jack for how I see him, nor should I.  It would be wrong of me to insist that the other children befriend and include Jack, because that would only serve to create resentment against him.  It is human nature to cling to the familiar and stray away from what is different, whether we wish to acknowledge that or not.  What I can absolutely insist upon is that everyone treats Jack with respect.

The value of Jack as a person, worthy both because and in spite of his differences and disabilities, will come to his peers with time.  It may be decades of life experiences before they see it.  They may have to have an autistic child of their own or know someone who does before Jack's worth strikes them with clarity, but they'll see it. Forcing it upon them does no good.

It is something that we must all learn for ourselves.

Wednesday, January 23, 2013

Close Call

I was returning home from a class at church on Sunday.  I set my bag down on the counter and proceeded to go outside.  The air was crisp but the sunny skies prevailed, making the day a welcome respite from the week of rain we had experienced before.  Brian and Jack had been home for about an hour and a half, yet had just come outside.  My boy's schedule was off, but it had been for days.  That's what happens when you couple rain with an expectation of recess on his visual schedule.  It had been a mess.

We coaxed Jack inside for lunch.  As I poured milk in his cup, Brian began to relay a scare they had while I was gone - a big scare.

Jack was eating a snack of some Cheerios while playing with his foam letter and number set in his therapy room.  It was a pretty innocuous thing for my boy to do.  He needs a fidget for most meals.  Letters and numbers fit the bill well.  At one point, Jack started saying "Fix 1", which in Jackese means "There's a hair on the number 1...get it off before I scream!"  Brian complied and began to search for the offending number 1, but he couldn't find it.  That's when he just happened to catch a flash of yellow in Jack's mouth.  He put it together; the number 1 was in his mouth.  He was going through the motions of eating it.

Now, that foam is - in reality - too tough for Jack to effectively bite through, but that didn't mean that he wouldn't try to swallow it whole.  Brian started asking Jack to open his mouth by telling him to say "Ahhh!"  Jack was doing it, but his little mouth could only open so far for so long.  He was struggling, so Brian did the only thing he could do; he pried Jack's mouth open.  He was able to wedge the number out of his mouth, but then Brian's finger took it's place as Jack bit down hard.  I know this feeling, as Jack will clamp down without showing any sign of releasing you.  It seems involuntary.  Brian did get his finger out of Jack's mouth, but not before Jack left a lovely set of molar impressions on his skin.

I was shaken.  I told Brian to go get that set of letters and numbers and throw them away.  Jack has so many, and I was not going to risk another incident.  As Jack ate lunch, we discussed what needed to happen.  We agreed that we'd talk to Jack's team about helping us by teaching Jack how to open his mouth, or by giving us some other way to gain access to Jack's mouth in a similar situation.  We said that we weren't certain that Jack had intended to put the "1" in his mouth.  He might have not been watching what he was doing - not uncommon for him - and might have put the "1" in his mouth accidently.  He has been chewing on his fingers and sleeves more lately, so that cannot be completely ruled out either, but Jack's oral defensiveness seemed to make it less likely.  He won't put food items all the way in his mouth, let alone non-food items.  We also agreed that we would need to supervise Jack more around small toys, as he still lacks the verbal ability and awareness skills to let us know that something is wrong and to take care of it independently by either reaching in his mouth to get the item or by spitting it out.

I sent out an email that day to Team Jack.  We have had near choking incidents multiple times over the past year, and this was a situation that we had to remedy.  We simply could not continue without some way of getting in Jack's mouth to effectively remove choking hazards and pocketed foods.

As we approached Tuesday, I was eager to hear some ideas and solutions.  What I wasn't expecting to hear was that the situation was a safety hazard that we had mismanaged.  It wasn't the solution I had wanted to hear - that we simply needed to avoid situations like this to begin with - because that seemed to be a given.  Of course I wouldn't want my child to risk choking, but the hazards aren't always apparent.  You can't always sterilize the world for your children.  With Jack, even food can be a choking hazard (he's choked before, you can read about it --> here <--).

I felt ashamed, like there was something more I could have - that I should have - done.  I'm not sure that there was, though.  How do you know that something innocuous is a danger until that danger presents itself?  There's a first time for everything.

Honestly, I don't know if I would have done any different.  Hindsight is 20/20, but when you are in a situation you don't always see the inherent dangers.  If I restricted Jack's access to small toys that he could potentially choke on, I would not be giving him the benefit of the doubt that he is capable.  I would be denying him an opportunity to work on those critical fine-motor skills - like his pincer grasp - that still need a little work.

Yes, I know where my son is developmentally, but chronologically he's almost 4.  There is something in the back of your mind that makes you think that if other nearly 4-year olds can play with this safely, so can he.  For a child who fights tooth and nail when we try to get food in his mouth, I never would have suspected that I would need to be concerned about him potentially chewing and attempting to swallow a small foam number.  He's always been a mouther, but never a chewer or an eater.

It's tough to draw that line.  How do you draw a line between your child's abilities and his chronological age?  Where do you start?  How do you avoid "babying" while still ensuring that you bear in mind their developmental abilities and needs?

For this situation, it was a lesson learned.  In the end, we didn't get any real solutions other than avoidance.  My hope - my prayer - is that avoidance is enough.

Special needs parents can never rest.  We must always stay vigilant.

Tuesday, January 22, 2013

Does My Child Lack Empathy?


Empathy.  It’s a part of the discussions that comes up when you have a child with autism, for better or worse.  Within the autism blogger community, I find many people want to reiterate that individuals on the autism spectrum are empathetic.  I read account after account about empathy, and it’s always left me feeling a bit isolated.  The thing is, I’ve questioned whether or not Jack feels empathy, and I’ve felt bad about that, as though I’m less of a parent for it.

Until I read this wonderful account on empathy titled The Empathy Conundrum, written by Musings of an Aspie (and if you have even a few minutes in your day, I highly recommend reading this piece and poking around on her blog a bit...her writing just universally makes me nod in agreement).  Reading it, I wanted to scream out “YES!  This is my experience!”  It made me feel validated.  I’m not wrong for feeling like my child lacks empathy, nor is he anything less for it.  Empathy doesn’t mean what we think it means.

It got me thinking about how our society has really grown to misinterpret the true meaning of empathy and how it relates to individuals who may have some deficits in this area.

First, to see where I’m coming from, we have to examine some definitions.  If you look at the diagnostic criteria for Autistic Disorder as defined in the DSM-IV-TR (and as cited from the CDC's page on Autism Spectrum Disorders), one of the social criteria reads as follows:

“...lack of social and emotional reciprocity.”

Nowhere in this does it say that autistic individuals lack empathy, yet it seems to be the statement that points society towards thinking that autistics do lack empathy.  In all fairness to those who say that they are empathetic and autistic, nowhere in the DSM-IV-TR does it say that they cannot be empathetic.  That is a construct that we have created in our stereotype of the autistic person.

Now, let’s look at what society defines empathy to be.  Empathy, as many of us imagine it, is the ability to feel bad for someone else.  However, is that really what empathy is?  Let’s examine the true definition of empathy, as reflected in the American Heritage Dictionary:

"Identification with and understanding of another’s situation, feelings, and motives."

When looking at it this way, I can nod and say that I do believe my son has deficits with empathy.  By this definition, empathy can be found in statements like the following:

You look like you could use a hug.
I hurt with you in your loss.
You look like you’ve had a rough day.

Those statements show someone identifying and understanding the emotional state of someone else.  I feel sad and could use some affection, so you tell me that you think I could use a hug.  You empathize with my feeling of sadness and can read that what I need is the shared experience of a hug.  I think that I’m not alone in saying that this is something with which my child would struggle.

Does it make him scary or someone to be feared?  I’d argue no.  It just means that my son has a hard time understanding the emotions of others.  Nothing more.  Nothing less.  That doesn’t make him malicious or unfeeling.  It just means that his ability to understand and identify emotions is diminished. 

That’s not a good or bad thing – it just is.

As parents, why is it that we want to insist that our kids do in fact feel empathy?  Why is it that many within the advocacy and self-advocacy communities want to insist that autistics feel empathy?  Certainly some do.  As with anything else with autistics, it’s a spectrum of abilities and disabilities.  Some people surely have a better ability to understand emotional states that others.

Is it because we are trying – erroneously, in my opinion – to link empathy with sympathy?  With caring?  With love?  After all, isn’t that what we – as parents – are trying so hard to prove?  That our kids feel love?

Empathy has nothing – NOTHING – to do with love or one’s ability to care.  Think about it.  Have you ever loved someone that you just didn’t always understand?  Maybe your autistic child?  Beyond that, did you ever have a “crush” on someone who seemed so outside of your type?  Just because you look at your child and can’t identify how he or she is feeling doesn’t mean you love him or her any less.  Have you ever loved someone unconditionally?  The definition of unconditional love seems to imply that it is outside of one’s ability to understand or do or say anything.  They simply love.

Do you want proof?  My son loves his red Sleep Sack.  He rubs it on his face.  He chants a nonsensical string of jargon when he does.  He then puts it to my face.  I don’t get anything out of the experience of feeling his Sleep Sack on my face, so in that regard, Jack is not picking up on my emotional state.  He doesn’t get that the physical act of rubbing fleece on my face isn’t as enjoyable for me as it is for him.  That would indicate a deficit in empathy; however, he enjoys it, so he gives it to me, too.  That would indicate to me that he CARES.  He LOVES.  He doesn’t show it in the same ways – i.e. affection – that other children might, because he doesn’t understand those things.  What he understands is concrete – sensory experiences, stims, and the things he enjoys.  Putting his Sleep Sack to my face is his way of saying, “This is nice.  You have some, too.”

That, my friends, is CARING.  Caring and love can – and do – exist outside of empathy.  He doesn’t have to understand what I need – affection – to demonstrate that he feels something for me.

As parents, we need to lead the way in how the conversation about our children is conducted.  If we don’t, who will?  The next time that someone asks me about the subject of empathy, here is how I will respond:

“My son struggles to fully understand emotions – both in himself and others – but that doesn’t mean that he doesn’t feel.  I can say unequivocally that he feels something akin to love and caring, even if he can’t identify it as such.”

Love and empathy aren’t linked.  Neither is caring, compassion, or sympathy.  One doesn’t need to be able to understand in order to feel.  After all, isn’t that why extreme emotions seem to bother our children at times, because they don’t understand them?  Yet our kids feel.  They do indeed feel, so the thought of a lack of empathy being equivalent to an unfeeling monster is wrong.  We – as parents, advocates, self-advocates, and members of the greater autism community – need to be sure to drive that point home, because the cruelty I see that comes from a lack of understanding isn’t originating from autistics, but from the NT individuals who do not try or want to understand autism.

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By the way, you would be missing vital insight if you didn't just go "Like" Musings of an Aspie's Facebook page, too.  That's just my 2-cents.

Thursday, January 17, 2013

Discover Great Voices: Having a Fields Day

There is much diversity within both the disability and autism communities.  The range of abilities, strengths, and challenges within our children - and within disabled adults - is without end.  That is what I love about this Discover Great Voices series; I can highlight the vast array of perspectives within the special needs community and introduce you to a writer that might speak to a specific situation within your family.

Today's Discover Great Voices writer is Allie from Having a Fields Day.  I discovered Having a Fields Day when I was featured on Notes From a Pediatric Occupational Therapist's Parents' Perspective series.  I was looking at what other parents did while preparing my piece and started following Having a Fields Day after reading her feature on that same blog.  Both of our boys are the same age and while their abilities and challenges vary - as they do with all kiddos with special needs - I always find it comforting to read about the experiences of other families parenting 3-year old boys on the spectrum.

What I love about Allie's blog is the interesting perspectives she gives on her two children and their strengths and challenges.  She speaks of a vast array of topics, including autism, SPD, and homeschooling, as well as parenting gifted and twice-exceptional children.  Like so many of us, Allie's children have a unique mix of strengths and areas of challenge, which she approaches with thoughtful reflection and insight.  In particular, I appreciate her ideas on homeschooling young children with special needs, as there are very few blogs that speak of homeschooling special needs children at all, and hers is the only one of two I've found that discusses homeschooling in the preschool years.

She also has a Facebook page (check it out --> here <--) and a homeschool blog (Going on a Fields Trip) that has TONS of ideas about homeschooling very young children.  So, whether you're looking for ideas on homeschooling or just looking for someone else who walks this same journey of parenting young children with special needs, check out Having a Fields Day and tell her that Reinventing Mommy sent you.

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Have an idea for the next Discover Great Voices writer?  Email me at reinventingmommy@gmail.com to share your favorite authors, bloggers, and voices!




Tuesday, January 15, 2013

Faith and Your Special Needs Child

I rarely mention faith on my blog.  I find it a polarizing topic and something that makes people feel uncomfortable.  I try to wrap my head around that concept and I just can't.  I wonder if it has something to do with the fact that faith requires to confront two aspects of our lives that seem troubling and counter to the mainstream - conformity and belief without knowing.

Most NTs and autistics alike, whether they admit to it or not, enjoy the feeling of belonging.  We want to be a part of a larger group to whom we can relate and that respects us for our ideas.  Religion forces us to break down into factions smaller than our social circles typically dictate by dividing us up into denominations.  If you think about it, with few exceptions (I'm thinking very small communities or isolated sects) do our social groups not include members of multiple denominations and - indeed - religions themselves.  We might have friends who are Jewish, who are Baptist, and who are Catholic - a very good thing, in my opinion - and we might not want to shift conversation to something that might separate us from the group.

Religion also forces us to confront the fact that many of us believe in a higher power, but without direct knowledge of that deity's existence.  I don't think that blind faith is the appropriate term, because many of us were raised in a religious tradition that fostered those beliefs from an early age.  That's not "blind faith", in my opinion.  Rather, we do have to admit that we believe in something that we cannot physically prove to exist.  To show how reluctant we might be to admit such an aspect of our lives, ask yourself this question...would you be willing to tell everyone in your office that you believe in ghosts?  It's the same concept.  You would be admitting to someone that you believe in something that you cannot see and prove.  Many of us might hesitate to do so.

Yet, I find that having a child with a disability causes several reactions surrounding faith.  One, parents, friends, or well-meaning family members use faith as a reason to justify being "given" a special needs child.  Two, parents might feel angry with their higher power and reject religion.  Three, parents might not reject religion, but might be confronted with a church environment that is not as inclusive as what we expect our schools and communities to be.  Finally, parents might turn to religion as a way to muddle through.

None are wrong.  There are no right or wrong answers to the dilemma of religion in the life of you and your special needs child.  I do know that I frequently hear parents ask other parents how they fit religion into their lives and the lives of their special needs child, because inclusive environments in churches do appear to be more of the exception rather than the rule.  In a rare outing myself on our religious practices, I'll share the Reinventing family's experience with religion and how it fits into our lives.*

We're Catholic here in the Reinventing house.  If you are Catholic, or know anything about Catholicism, you might know that it's a faith based very much on ritual.  The Mass is celebrated in much same way with the exact same readings in every Catholic church on the planet each Sunday.  Some aspects vary from culture to culture, but we all do just about the same thing.  It's routine, predictable, and unwavering.  Raising a child that loves routine, the predictable, and the unwavering, I can imagine that the Catholic faith might be easy for him to follow, if not to understand.

Yet, how do we do it as a family?

Most Catholic families take their children to Mass from a very young age.  Ideally, Jack would now be attending Mass to receive his blessing each week while we receive Communion; however, that is not the case right now.  Instead, Jack attends religious education classes with a 1:1 aide while Brian and I attend Mass each week.  When classes aren't in session for Jack, his aide takes him to the nursery.  He's technically too old to go to the nursery, but our church has been very accommodating.  Right now, he's not really learning or participating in his religious education class, but that's not really what we were going for this year.  This year is about getting him used to the situation and used to his aide.  There is a Montessori class at our church as well and Jack will enter that class next year with the hope that the hands-on, child-led approach might help him eventually learn (this year the class was full).

I'm not sure when we'll start trying to take him to Mass.  It may not be for several years.

As for taking his sacraments, he'll do it.  He may do it by rote, but he'll do it.  We are incredibly fortunate in that our church has a special needs coordinator who helps with all aspects of integrating Jack into the church.  She helps the deacons and priests understand Jack's needs and helps them understand how they might have to modify sacraments so that they are still considered valid, but also so that he can fully participate.  His next sacrament year is still 3-4 years away, so we've got time.

His music class - run by the special needs coordinator - also takes place at our church.  Honestly, it took about 3 years and a lot of reflecting before we decided that we were ready to start attending Mass again after Jack's birth.  Before that, trying to integrate him into church life seemed like an insurmountable task.  We needed support to feel like we could do it.

I know that our situation does not exist for most of you.  Most churches don't have an extensive support network in place to help our special needs children; however, some do.  I think that number of select few is growing.

If you feel compelled to attend religious services with your special needs children, don't be deterred by the fact that supports aren't currently in place.  The special needs coordinator at our church has special needs children - now young adults - herself.  She had to create these programs for her own children.  What I've found is that you might need to create a program at your church that supports your child.  Forging the path for your child will have the added benefit of forging the path for others.  If you do run into resistance at one church, then switch to another and another until you find a welcoming environment.  Talk to the priests and education coordinators to see what they can do for your child.

The point is, don't be deterred.  You may encounter resistance.  You may find less than welcoming environments.  If you are persistent, you will find a place that you feel comfortable.  We don't remove our children from school or the community because they have special needs, so don't remove your children from practicing your faith for the same reason.

You can - and should - include your children in any and all parts of your life that have great meaning to your family...and don't let anyone make you believe otherwise.

---

* For simplicity's sake and the purposes of this post, I'm using several of the Catholic terms for various religious places and roles - like priest and church - to represent the head of a place of worship and a place of worship, respectively.  That does not mean I'm endorsing the Catholic faith as the answer for special needs families.  There is no right or wrong answer when it comes to your family's personal faith.

Friday, January 11, 2013

What If He Hates Me For It?

It's a question I whisper more often than I'd like to my husband.  I stand in front of our calendar, writing in next month's therapy schedule.  It makes my head spin.

I look at the recommendations for my son.  More of this, more of that.  We've got to do more.  We need to fit more in.  We've got to find more time, more energy, more money to make it happen.

When I stop and pause and look over at my blond-haired angel playing on his iPad after a long day, the thoughts come rushing to my head.  In my moments of uncertainty, I voice them to my husband and - partially - to myself.

"I don't want him to hate me for all of this."

---

There seems to be a divide in the autism community at times between NT parents and autistic adults.  I haven't really ever been a part of any actual squabbles between authors/advocates/activists, so I really can't even list fully all of the reasons why these disagreements happen.  It might come down to the idea that NT parents want to change autistics to make them more NT (I don't think this is universally the case).  I think that some NT parents think that people who support neurodiversity believe that children shouldn't be put through therapy (again, I don't think this is really the case, either).

You can see where some conflicts might arise within this dynamic.  I suppose - as with many things - it comes down to misunderstandings on both sides.  Personally, I try to stay out of it.  With vary rare exceptions - think Jenny McCarthy types - I consider each person's viewpoint to be valid and worthy of consideration, but not necessarily action.

Try as I might to wrap my head around it all, I can't.  Call it naivete.  Call it foolish optimism.  Call me one of those people who prefers to see the glass as half-full, but I really believe that we all don't have that much separating us, fundamentally.  I really believe that everyone can meet halfway and listen to each other's side.  After all, what everyone wants is to be HEARD.  Autistics want NT parents to hear them.  NT parents want autistics to hear them.  Action truly is secondary; everyone wants to have a voice in a subject that is a major part of their lives.

When I bear witness to these debates as an online wallflower, one thought crosses my mind each time.  It horrifies me to think about, really.  I watch the accusations on both sides of a lack of understanding, of how one side or the other can never truly know what it's like to walk in the shoes of the other, and how I - as a NT parent - will have to accept that I'll never be as capable of understanding my child as someone else.

It suddenly brings me roaring back to my original thought...

Will my son hate me for what I do, for the decisions I make, and for my inability to understand?

I feel it in the pit of my stomach.  I love my child more than life itself.  I love who he is.  I love the amazing, hard-working, beautiful, and - quite often - quirky person he is.  I don't stifle his stimming.  I don't shush him through his echolalia.  I treat his words like precious gifts.  I don't push him into situations that I think he might find uncomfortable, though since he can't communicate it to me well at this time, I'm sure it happens without my knowledge.  I take pride in every little thing he does, and I try to remind him daily of my pride for him and each little milestone he makes.

But...I do keep my child in a pretty intensive therapy schedule in addition to what he receives at school.  I don't do it to make him NT; I do it to equip him with the skills he needs to navigate his world more efficiently and independently.  I put him in speech therapy so that he can bridge the gap between what is going on in his mind and the outside world, so he can eventually communicate his needs, wants, and ideas to others, and so that he can learn to chew and swallow safely so that he can - eventually - enjoy the pleasure of eating.  I put him in occupational therapy to give him the self-help skills to help him not be as dependent on others and to help him learn to self-regulate to increase his own comfort level with the world around him.  I put him in physical therapy so that he can gain the motor skills to successfully navigate the world around him safely and so that he can gain the stamina to not be as exhausted with the movement required for daily tasks.  I put him in Floortime-based programs to help him connect with others in a way in which he can feel safe and lead the way.

It's a lot on his plate, I know.  We do it because we want him to have the tools he needs to make his life easier.  I don't want to change him; I just want life to be easier for him.  If - as he ages - he decides that he's had enough and he can express that to me in some way, I'll respect that well-thought out decision.  Having had enough is different than just not wanting to go because you'd rather be doing something else.  Having had enough is equivalent to saying that the treatment doesn't outweigh the benefit.  Ultimately, it's his life and if he makes those choices as he ages, I'll have to respect that.

What I won't allow him to do is give up trying.  I won't allow him to use his autism - or any of his other disabilities - as an excuse for why he can't do something.  I set the bar high because I believe in him.

And for all of this, for the constant therapy, the appointments, the encouragement, the reinforcement, the lack of implicit understanding on my part, and any myriad of other things, I'm scared as hell that my child will wake up one day and feel like I can never understand and be a part of his world, when all I've ever wanted is to do just that.

I want to be a part of his world, wherever it takes us and whatever roads it leads us down.  I want him to know that I will love dinosaurs, or weather, or even magnetic letters - if that's the way it's going to stay - just because he loves them, too.

But what if that's not enough?  What if he only sees me trying to change him, even though that's not what I'm trying to do?  What if he sees me as closed-minded when I'm trying to be the most open-minded mom I possibly can?

Because the person I love most in this world - besides my husband - is that beautiful little boy sitting at the other end of the couch.  Because I want him to know that...to know that I love him endlessly.

And I don't want to make a mistake.

Discover Great Voices: Mealtime Hostage

As I mentioned when I initiated the Discover Great Voices series, I wanted to highlight a myriad of voices in the disability and special needs community at large, be they disabled individuals themselves, or parents raising a special needs child, or a service provider like a teacher or a therapist.  I purposely did not want this series to be simply about autism because many of our children have other disabilities and diagnoses in addition to autism.

Jack has struggled with feeding issues since day one.  The day he was born, he began to show signs of oral-motor problems, though we didn't know that at the time.  Flash forward to his 2nd birthday and Jack was suddenly diagnosed with dysphagia - a disorder involving the neurological coordination of the chewing and swallowing functions - and a severe feeding disorder with both sensory and oral-motor components.  While many autistic children do have feeding issues related to sensory issues, I found myself very much alone in dealing with the oral-motor and neurological aspects that other parents were not.  I found very few websites or bloggers who focused on feeding and the impact that it can have on a family.

Until I discovered Mealtime Hostage.  

Even the name of her blog represented a true understanding of just how pervasively feeding disorders can affect a family.  For years, I dreaded every meal with my child.  I dreaded the crying, the flailing, the vomiting, and my own anxiety over watching my child eat so little while his weight percentiles continued to plummet.  I was developing PTSD-like symptoms with regards to meals in our house.  I was held hostage at my own dinner table by my son's feeding disorders.

Yet, the post that I felt spoke to me - and thus made me a Mealtime Hostage fan - was her post from October 16, 2012 titled "Beyond Picky: You Are Not Alone".  With each word I read, I wanted to jump up and scream "Me too!".  It was cathartic.  In particular, I love this passage from that post:

"Dear fellow parent:
So, you have a child that consistently refuses to eat the food you prepare for your family. You’ve probably heard lots of advice and tried it all, hoping to sway your picky eater over to the more adventurous side and failed.
You are not alone.
You’ve also likely received some pretty harsh judgment and ridicule from finger pointers, blaming you for being an overindulgent parent who only enables your child’s picky eating. These never-had-to-deal-with-it-myself types have all the answers. Force him to eat it. Hunger will fix it. Let him starve, they say, after all, this isn’t a restaurant. You’re spoiling your child. It’s all your fault.
I’ve heard it too. Understand that none of the people behind those pointed fingers have a child like yours and mine. None of them are able to explain how I fed twins the same food from the same spoon and ended up with a daughter who eats everything and a son who eats barely anything. This is an equal system – I spoil no one or I spoil everyone. So, tell me what I did again?
It is not your fault, and you are not alone."
It spoke to me, and I imagine that it probably speaks to some of you as well.

What I also love about Mealtime Hostage is the wonderful community she's assembling on the Mealtime Hostage Facebook page to share resources, suggestions, and stories.  Whenever I see that she has recommended a particular post or article, I nearly immediately check it out.

I appreciate that Mealtime Hostage takes the time to highlight the very real challenges of raising a child with a feeding disorder.  She's filling a niche that someone needed to fill and creating a place where those of us with children who struggle with feeding can go for support, suggestions, and answers.

I highly recommend you take a look at her blog and her Facebook page, whether your child simply is a picky eater, your child has feeding issues associated with fear, your child has a sensory-based feeding disorder, or if your child's struggles are more neurological/oral-motor based (or, as is in our case, all of the above).  There is something for all parents who are raising a child who struggles with food over at Mealtime Hostage.

Thursday, January 10, 2013

Struggle Does Not Equal Tragedy

In an ordinary kitchen on an ordinary day, he mingles about gathering the ingredients for macaroni and cheese.  He verbally ticks them all off - noodles, cheese, milk - as he puts a pot on the stove to cook and presses the keys on the oven to fire it up.

"Mommy, do you want watermelon in your macaroni and cheese?"

She looks up from her magazine.  "No, I think I'll take my watermelon on the side."

He nods in acknowledgement and resumes his cooking.

---

This whole scenario occurred in the most ordinary of places - the therapy clinic's waiting room - on the most ordinary of days.  Yet, as I sat at my all-too-familiar post on the black leather-like couch, I knew that I was bearing silent witness to a marvel of human development.  I was watching the newly-minted 3-year old NT sibling of another patient at the clinic as he engaged in the delight and imaginative power of his own play.

It truly is extraordinary the way in which children develop.  As special needs parents, we bear witness to what occurs when these mechanisms don't work as they do in typical children.  We see what happens when development deviates from the norm.  Yet when you think about all that must occur to produce a newly-turned 3-year old who is going through the motions of serving his mother a watermelon-containing macaroni and cheese dinner, it is a wonder that special needs children are not the rule rather than the exception.

The brain is a miraculous thing, producing in such a short time span thoughts that seem so mature while maintaining that child-like innocence.  In many ways, when I see typical children play, I cannot turn away.  The way in which they play - a way that seems so foreign to this house - is so simultaneously awe-worthy and amazing to behold.

Yet those moments of watching with wonder always turn into something akin to being punched in the face.  Here is a child playing so easily, conversing with his mother in a clear, logical, complete sentence-filled way, and  all the while he is a year younger than my boy.  Developmentally, he's about a year to a year and a half ahead of my boy, even though this NT sibling is younger.

I shot off a Facebook status update about that encounter, but I cringed as I hit "Post".  Why would I do that, you might ask?  Well, because I feel like we champion honesty, but each time I reveal a little part of the struggle rather than the victories, I fear one of two scenarios:  someone with a newly diagnosed child feeling like this life sucks or someone who will jump to the conclusion that highlighting a snippet of struggle is me trying to claim tragedy.

I don't think life is so black and white, but then I thought...it doesn't have to be.  Life is messy and complicated and has twists and turns.  I can feel a little twinge of heartache when I see another child engaging in this beautiful back-and-forth, give-and-take exchange that many of us - before we were parents - pictured we would do with our children.  It's okay to feel that way from time-to-time.  It's natural to be disappointed when life is not the way you imagined; I'm only human.

The struggles do not make my life a tragedy, nor do they make my son's life a tragedy, either.

What I have to realize - what we all have to come to terms with in this journey - is that there will be times when it just hits us that our children are different from other children.  We aren't saying that's bad, we're not saying they are any less for their differences, but we're just stating a fact.  At certain points in our lives, those differences might catch us by surprise and make us think "WOW!", leaving us simply in awe of what our children can do.

At others, it might leave us feeling a bit of sadness.  We feel sad that we don't get to experience these moments at this time (if ever).  We feel sadness at the thought that our children might not experience what was such a beautiful part of our own childhoods.  We might feel sad that our child can't pretend to feed us watermelon macaroni and cheese.  We might feel sad that our children can't understand Santa.  Those feelings are valid and - in many ways - healthy to feel so that we can release them and move forward.  We can also take solace in the fact that it is temporary.

It does not make us, our children, or our lives something to be pitied.

Rather, we experience a whole new set of emotions, memories, and love.  After all, how many NT parents can remember when their child first pointed?  I can...this past summer, at the age of nearly 3.5 years old.  I can remember the exact circumstances.  I can remember his first word post-regression with amazing clarity.  Just yesterday - at nearly 4 years old - Jack's grandma (who works at his school) blew him a kiss as he walked down the hall.  Jack put his little hand up to his mouth after she did; it was his attempt to blow a kiss, too.  The front-office gal standing next to my MIL began to cry as she watched the exchange.  This isn't a tragedy; this is Jack sharing with the world just how miraculous these little moments are, the ones that have been so hard fought for and we see so rarely.

So, I will no longer feel ashamed for feeling those twinges of sadness.  It's okay.  It's natural.  It also doesn't make my life awful for it.  It just makes my life a reflection of the messy, complicated, crazy roller-coaster ride we know as reality.  It doesn't mean it's tragic.  It means it's different.

Wednesday, January 9, 2013

What It's All About

Every so often, I go back and reevaluate what I'm doing here - what my purpose is - in writing this blog.  In a way, I did so a week or so ago when I was contemplating giving it up for a while (see my post Walking Away), but I really wasn't evaluating the reasons to continue.  I was looking at the reasons to stop.

Ultimately, I felt compelled to stay.  Call it habit or some other emotion, but I'm still here, and - as best as I can reason out - here is why:

I've said before that the "Me too!" moments are what I'm going for each day.  I want to find camaraderie in this journey, but I hope that you do the same.  I hope that for just one person a day, they can read something I write and have that cathartic feeling of "Me too!  I thought I was alone, but I'm not!"  We can share struggles with people who GET IT.  We can share the small triumphs with people who GET IT.  It is through this mutual sharing of experiences that we can all take comfort in the difficult moments and feel all the more proud for the little victories.

We all know that support makes this journey - a journey fraught with trials, tribulations, and beautifully sweet rewards - all the easier to travel.  None of us is an island.  It truly takes a village to raise each of our children, as is evidenced by the team of professionals we all assemble to undertake that task, but it also takes input from others who have walked this path.  It takes input from other parents who have raised or are raising special needs children, because it is these souls who can best understand what it is like to walk daily in my shoes.  It also takes input from autistic adults, teens, and older children, because it is they who can best describe what my boy cannot in both the good times and bad.  It is through virtually walking hand-in-hand with each of you that I can be a better parent, a better advocate, and a better person.

In a nutshell, it's about building a community.  It's about building a community that I hope my child can enter into as his days increase and - God willing - use his own voice to speak of HIS journey and advocate for himself.

Besides this, I feel that I have a responsibility - an obligation - to advocate for my child and all autistic and special needs children.  Now that I've walked this path with my child, I can never return to the life I lived before.  He has forever changed me, and for the better.  He has shown me what true beauty is, what true love is, and he has shown me the goodness that exists within humanity.

The trouble is that not everyone sees that.  Some people look at my child and see their definition of autism.  They see flapping hands - a red flag - or speech delays.  They see an awkward gait or a meltdown.  I cannot change that people are going to judge my child, but I can change the conversation. I can influence the dialogue so that what they see is not what they imagine.  I can help them see that flapping hands is happiness.  I can help them see that speech delays are both a neurological condition and my boy working so hard and coming so far.  I can help them see that the meltdown isn't the result of a "bad kid", but the product of a nervous system that processes the world differently.

If I don't share his story, if I don't work to educate others, and if I don't spread truth and understanding about autism...who will?  Sure, there will be others to take my place, but who best to do so than my son's mother?

My child doesn't live in isolation, either.  He, too, is a part of a community of autistic children, one that grows daily.  By default, through sharing his story and trying to make the world a better place with more understanding about autism, I hope to be doing the same for every child like Jack.

Building community and changing the world - that's what it's all about.

Monday, January 7, 2013

Not Worth The Energy

There has been a buzz about Facebook and the autism parenting blogosphere over the past few days.  It involves a comedian - one who apparently has a child on the spectrum - and his use of the R-word during his comedy routine in reference to his own child and others like him.  Once another autism parent tried to point out via Twitter the damage inherent in his poor choice of words, this comedian was rude and ignorant in his retorts to her.

Now, you may notice that I refuse to mention who this is.  I refuse to put links to his pages or call out the troops to launch a campaign against him.  I refuse to put screenshots - which have been circulating around - of the Twitter conversation up for all to see.

It's not because I don't think that it was wrong what he did.  It's because I don't think that we should give these celebrities who suffer from a lack of scruples the satisfaction of page hits or headlines.

We live in a world where the Kardashians make the covers of every magazine.  We live in a society that actually watches Here Comes Honey Boo Boo and the various Real Housewives shows.  I'm not trying to come down on our society like an overbearing parent, but we have come to champion the bad behavior of others.  Rather than the days of good television - quality dramas and even sitcoms - we have inundated our TV screens with "reality" TV that resembles anything but reality.  The people who  have become our new celebrities are people who behave in such outrageous ways that we can't bear to watch, but we can't look away.  "Train-wreck TV" has become the standard.  If you want to get featured, you have to do something outrageous.  You have to be a part of the train-wreck to be a part of the show.

So, is it any wonder that we find throngs of celebrities saying horridly offensive things, not just about beautiful special needs children like ours, but about everyone?  These celebrities have taken a lesson from their reality TV colleagues - and indeed, many toddlers - in knowing that negative attention is still attention.  People may despise you, but they'll watch regardless.

So, when the talking heads and comedians spew forth some quip or joke or other off-handed comment that makes our blood boil, yelling ignorance won't solve anything.  They know what they're doing.  They're making these comments because it gets them a few moments of precious attention.  The reality of that fact is that celebrities who do this will not stop no matter what we say to them.  No amount of protests or calls to clean up their act will cause them to reconsider.  Simply drawing negative attention to them is what they wanted.

Here's the secret to making celebrities listen - we no longer listen to them.  We can act not with rallying the forces in protest, but in simply ignoring their bad behavior.  We need to stop mentioning them by name.  We need to stop sharing their videos, posts, and other media that reflects their poor choices.  We should turn off the TVs, stop reading their words, and refuse to give them the attention they so desire.

They aren't worth our energy or efforts.

Then we can talk to the people who matter, like our family, friends, and neighbors.  We can help them get to know our children - not just autistic children, but all of our beautiful special needs babies - so that there is a face and name and a person behind the words.  We should speak up amongst our friends to help them understand the power one simple word has to hurt so many.

Teach your friends to replace the R-word with another one - RESPECT.

If we do this, if we work to create communities that do not tolerate the hateful speech of those who are in the spotlight, if we work to get others to simply turn away from the attention-seekers who would sacrifice our children for a few more moments of fame or trending status, then that is where we will have made our impact.

Again, slaying the dragons for spitting fire when they'll always spit fire is no way to evoke real and meaningful change.  Instead, focus your efforts on the world around you.  Ignore the others.  Make your world a better place.

Besides, it would do us all some good to turn off the TV, the news channels, the comedians, and reality TV every now and again.

---

Want to enact REAL change?  It starts at home.  It starts with YOU.  Take the pledge to stop using the R-word and encourage others to do so.  Changing the mind of just one person makes all the difference in the world.

Visit Spread the Word to End the Word at http://r-word.org/.

Shake-Up and Burn-Out

I sit on the couch in Dr. DP's office - a couch so familiar to me that it now seems an old friend - as I watch my boy scamper about the room.  Like the couch in the clinic, I feel that this one has supported me through such emotional highs and lows.  It was firm against my back when Jack was diagnosed.  It will be there still as his progress ebbs and flows over the years.  It will bear witness to the progress, the good news, and the bad.

We have been at the DP's office for about an hour.  We've already met with the social worker, as is customary, and Dr. DP's resident has spent some time with my boy as well.  She's gotten to bear witness to Jack's scripted ABC ritual as Dr. DP now has not one but two wooden letter puzzles.  Congratulations, Dr. Resident, you've just gotten to see perseveration at it's finest!

At this point, my boy is holding it together remarkably, but I can see he's fatigued.  Upon entering Dr. DP's office - a room more akin to a home office/playroom than a medical exam area - Jack made a beeline for the toy house that Dr. DP keeps among his throngs of toys in search of one item...a toy lamp.  Why the lamp holds such appeal, I'm not sure, but he holds it up towards his face, pacing about the room and as he holds the lamp so tightly that his little hands shake, he says "LAMP!"  This process gets repeated until Jack gets tired and sits down, placing the lamp on the floor to knock down over and over again.

Dr. DP sees progress.  He sees great progress.  For most areas of development, Dr. DP is estimating - without any formal testing - that Jack is functioning around the level of a 2 - 2.5 year old.  He's almost 4 years old now, placing him at about 1.5 - 2 years behind.  Considering that Jack was functioning at a 6 - 7 month old level when he was diagnosed 2 years ago, this is great progress, indeed.

And yet, when Dr. DP looks at Jack's current list of interventions and therapies, he seems less than enthusiastic.  "Jack's anxiety is increasing."

This is true.  Dr. DP has already seen the effects of Jack's anxiety and sensory issues today.  We were in the social worker's office when Dr. DP came in and needed to have her print some forms for another family.  We stood by for a moment as the social worker complied with Dr. DP's request, only to have Jack begin to get nervous and upset as the printer whirred and clicked and sprang to life under the social worker's command.  He's also seen how difficult it was to complete the physical exam portion of the appointment, as he finally conceded defeat in the interest of maintaining a relationship based on trust and not fear with my boy.  After all, Jack will be seeing Dr. DP his whole life, so why place that barrier of fear in between them for the sake of getting a peek at his ears?

For the second time in as many consecutive visits, Dr. DP looked at me and said, "We need to focus on sensory integration and regulation right now."  I nodded as my gaze dropped slowly towards the floor.  It was a sense of trying and failing that washed over me in that moment.  My boy's making progress, but I should be doing more.

We also discussed that Jack has made very little major social progress, other than his ability to simply tolerate other children in the room.  "Jack's at the age where he should be in a social skills program."  He gave me a list of social skills programs in our area and pointed one out that is Floortime-based, recommending it as his top pick.  I smiled and nodded as I accepted the list and added it to the stack of other lists, paperwork, and recommendations we were quickly accumulating over the course of our visit.

For the first time in a while, I felt overwhelmed.  That stack of paperwork not only included social skills programs, but recommendations for BCBAs to hire to work on potty training, plus "helpful hints" on potty training autistic children, plus sensory diet recommendations, plus IEP recommendations.  All I could think was this - we're adding another program?  We need to focus more on sensory integration?  What more can I possibly will myself to do?  How much more can I handle?

Here's the thing, I know he's right.  I know we need to do this.  So, why am I feeling so overwhelmed?

In a way, it reminds me of a conversation I had with a fellow room mom - and stay-at-home mom - from one of the Gen. Ed. kindergarten classes at Jack's school who was helping me with a school fundraiser.  I'm not sure that she was fully aware that I was the room mom of the Preschool Special Ed. class, but I didn't feel the need to reveal.  She was complaining about the fact that her daughter has both dance AND soccer each week and that it keeps her SO BUSY.  I just nodded, laughing on the inside as I silently recalled Jack's 6 therapy sessions and 2 special needs programs that await us each week outside of school.

Yet it's this additional social skills program and additional sensory integration work that seemed to set me over the edge.  My boy thrives on routine, intensive therapy, scheduling, scheduling, and more scheduling.  Down time drives him up the wall, what with his sense of order and routine.  So why can't I just go with it without grumbling?

Ultimately, if I'm going to be completely honest with myself, it's selfishness and fatigue that made me hang my head under the weight of even more recommendations.  It's the knowledge that I haven't had a day - with the exception of the holidays - in which we didn't have some type of intervention for Jack, and that includes weekends.  There have been no lazy afternoons.  After reshuffling Jack's schedule, I had finally freed up Thursdays.  Thursdays were to be that one blissful day of no after-school therapy, but now was I to lose that?

I guess it's just a sign that I'm not infallible.  That I am subject - like the rest of the world - to burning out.  I don't have an answer.  I don't have a solution, but I know that every time I've thought "I can't do this" before, I've done it and then some.  So, while I might feel overwhelmed now, the feeling will pass.  This, too, will become our normal.

It's the only "normal" we know here.

Friday, January 4, 2013

Discover Great Voices: E from The Third Glance

For the first week of my Discover Great Voices series, I would like to introduce you to E, an autistic young woman and PhD student, and author of the wonderfully insightful and beautifully honest The Third Glance.  I believe her blog can best be summed up through this quote from her post from December 19, 2011 - titled "The Third Glance":

"But then there's the third glance, the one that most people never bother to take, but it is the most important one, the one that captivates you, and turns that fleeting glance into a good long look."

It is in that statement that E challenges us to take that third glance at the others around us.  She encourages us to reexamine the myriad of people that we might overlook because of differences.  She inspires us to look again - more closely - to find the majesty and beauty and humanity within everyone in spite of our differences.

What a beautiful message that is to leave for the world.

Through her words, E shares with us all the inner thoughts and ideas of a young woman on the spectrum.  It is through her and others like herself that we as parents can truly learn more about our children and who they are.  So, I encourage you - each of you - to go look around at her blog and like her Facebook page.  You might learn something in the process about your children and yourselves.

I know I have.

Thursday, January 3, 2013

Autism Devotion: What Love Is

People may tell me that love is saying "I love you", or giving big spontaneous kisses, or enveloping someone in a big hug.  I think to myself, This is not love!  I'll show you what love is!  Love isn't speaking.  It's not hugs and kisses.  Love is an emotion - a feeling - and so much more.

Love is...

...offering your mommy a sniff and rub of her face on your red Sleep Sack because it's what you LOVE to do and, well, you are going to allow Mommy to have some of that sensory goodness, too.

...a smile and a flash of fleeting eye contact that makes a connection and says in a way that words do not suffice - "I'm happy.  I'm content.  I'm free, and you're a part of all of that."

...grabbing your favorite book, backing up and plopping down in your Mommy's lap, and letting her read to you before nap time when you never did before.  It's leaning your head back against Mommy's chest in a way that says "You make me feel at home."

...playing with magnetic letters, announcing each letter out loud - "A!" - and having Mommy repeat it all back to you and continuing that dialogue of echolalia that we engage in every day because - well - that's the way that you and Mommy "converse".  It may not seem like a "conversation" in the conventional way, but Mommy could care less because you speak, she repeats, and you smile because she knows that's what you wanted.  You wanted her voice to be a part of the scripting, too.

...playing your iPad, climbing up on the couch, and letting Mommy slide beside you on the seat.  It's then leaning your head against Mommy's arm as she gently wraps her arm around you so as not to scare you off.  It's sitting there in that embrace in which time seems to stand still and you feel so special.

...a simple word - "UP!" - because you take comfort in the arms of someone whose arms are always there to comfort you when you want them.

...the simplest of phrases - "More Mommy!" - that conveys such a simple meaning, "You are important.  I want you here with me."

Because while we as a society seem to define "Love" as the expression of verbal "I love you"s, hugs, and kisses, and while society might say that my child doesn't feel love and empathy and compassion, I can tell you that the little moments speak the volumes that his voice cannot.  You see, my son knows the secret that the rest of us do not.  Love isn't the conventional expressions.  Love is the feeling we give others.  Love is the world being a better place for someone else's presence.  Love is a the feeling of home, but surrounding a person.

Love is simply being for my boy.  He is love.

Wednesday, January 2, 2013

Discover Great Voices

Are you a great writer? Do you know one? Do you know a voice that needs to be heard?

As a writer with a smaller audience, I know how difficult it is to get my voice heard (and I really can't bring myself to self-promote), so I'm starting a new series to introduce you to the small business equivalent of the writing world, great, emerging, thoughtful new writers. Every Friday - starting this week - I'll be featuring on my blog and the FB a disability writer in a series I'm calling "Discover Great Voices", in which I hope to help introduce you all to great disability writers who have something meaningful to say.

What makes a great voice? A great voice doesn't have to be a blogger. They can just have a great FB page or Twitter account, or maybe they've written a book. A great voice is not polarizing, but inclusive of all. A great voice can be a person with a disability, or a parent, or a teacher, or anyone else who advocates for wonderful people like our children

So, I need your help. Are you a great writer? Do you know someone who is? Do you have a page, a blog, or a book to share with the world?

Here is what I'm looking for:
- Nothing too polarizing or extremist (I won't recommend Jenny McCarthy's personal page)
- A writer who has a connection to the disability community (doesn't have to be a disabled person or a parent - teachers, therapists, anyone will do)
- A writer who has either a) a FB page (not their personal one), b) a blog, c) a Twitter account, or d) has written in print media (magazines, books, etc.)
- Someone who has a talent and gift with the written word (spoken words are not necessary here!)

If you know of someone who should be featured (or if you want to be featured, don't feel bad about promoting yourself!), then please contact me with a link to the page you recommend either via private FB message or at reinventingmommy@gmail.com.

Help me find some great new writers!

Tuesday, January 1, 2013

A New Year, A New Chapter

There is something about the changing of a calendar, the start of a New Year, and that age-old tradition in the South of soaking the Black-eyed Peas for the annual feast that symbolizes how prosperous we'll be in the coming year that seems to call forth thoughts of reflection on the past 12 months.

I've now been blogging for over two years, so I have a couple of years worth of reading to reflect upon.  Specifically, when I look back at last year's post regarding New Year's Resolutions - titled Resolved - I find myself taken aback at one thing and that is my lack of a New Year's Resolution.  Rather, I was hesitant to set any goals for myself, thinking that setting a goal and anticipating change in our lives was a recipe for failure.  Indeed, I've written about it before, that every time a goal gets put on paper it seems to be the one thing that Jack won't do.

Yet, for my lack of wanting to set a goal, I am amazed at what I have accomplished this year.  I'm not trying to be a braggart or anything, but when I think that it was a year of relatively little major progress (which it was), I am surprised at the things that I can attribute to doing myself:
  • I began to be published elsewhere, starting with Hopeful Parents, then moving on to the SPD Blogger Network, the Oxygen Mask Project, then culminating with my first paid writing gig with BlogHer and - finally - being syndicated over at Autisable (see my post The Big News).
  • I started running again and completed my first 10K - the annual Atlanta tradition of the Peachtree Road Race (see my post The Peachtree).
  • I both survived and did a bang-up job of advocating for my child in his first IEP meeting (see my post The Long-Awaited, Much-Anticipated IEP Meeting).
  • Our family participated in our first Walk Now for Autism Speaks, Light It Up Blue, and raised over $1500 to help fund family services initiatives and autism research (see my post A Sense of Community).
  • I helped plan a special needs Santa experience that - while benefitting Jack - also benefitted others and collected toys to donate to Toys for Tots (see my post Restoring the Faith in Humanity).
On top of that, I also began serving on the planning committee for this year's Walk Now for Autism Speaks, plus I became active with both a local autism support group and a local special needs support group, and I began serving as room mom for my son's class.

So really, while Jack made progress this year - slow and steady growth - I feel that I have to take some pride in myself.  I accomplished a lot this year without really having any intention to do so.  I am proud of my angel for all that he's done this year, but I'm also really proud of myself.

In 2013, I actually am setting a goal for myself.  I began writing a book some time ago that I hope to finish.  A book that I hope will address the reality that most parents live when raising an autistic child - a reality that doesn't include cures or miracles, but real families of hard-working children and parents that are full of love and hope.  It's a book that I hope will highlight a real journey from growing up with limited knowledge of disabilities to raising a disabled child.  

I plan to finish writing my book this year; I'm not saying anyone will publish it, though, but at least I can try.

I look forward to this year.  I look forward to another year of progress for my boy as he grows and learns and develops, and I look forward to another year of progress for me as I do the same.