Thursday, November 29, 2012

The 20-Minute Rule

A few weeks ago, I was at a support group meeting in which the speaker was presenting on a topic that is of supreme interest to so many autism parents - meltdowns.  It showed; the place was packed for the presentation.  Now, this presenter's approach was - by her own admission - going to work only for children who are conversationally verbal, but as so many who speak on meltdowns do, she highlighted some things about meltdowns that just merit repeating.  The most important point I noted was that meltdowns - on average - take about 20 minutes to fizzle out under the best of circumstances.

Her claim to this 20-minute number was that meltdowns are the result of the triggering of the fight-or-flight response and that - in our kids - it takes 20 minutes for that neurological response to settle down.  This is without agitation, without escalation, and in ideal circumstances, too.

Now, I don't know about you, but the "fight-or-flight" idea definitely rings true with us.  I know that when Jack gets in full meltdown mode, it's a fists-swinging, screaming, crying, out-of-control-type situation.  I know you know this, but it's not a typical "I'm-developmentally-a-fledgling-toddler"-type tantrum, which Jack is capable of as well; this is an entirely different beast.  This is my baby's body coming under assault - by what I have no idea - and my reaction is almost always pity for him.  I look at the way he is screaming, flailing, and scratching at his skin and I think, "Why does he have to go through this?"  It's profoundly different than the reaction you hear that people have when their typical toddlers are having a temper tantrum.

I also have learned that Jack's meltdowns deescalate best when there is minimal interaction.  I sit nearby as he's been known to throw things or scratch himself during meltdowns, but I know that my presence isn't necessary.  He isn't looking at me.  He usually reverts to being non-verbal.  He may be throwing himself at me, head-butting me and throwing punches, but it's not about me.  I'm just a person there to take the blows.  I know that this isn't the time to say "No hit!".  It's not a good time to talk at all.  I deflect the blows and remain silent.  I wait until he starts to calm - when he's no longer a storm gathering strength - and I see the tell-tale signs of coming down off of meltdown.  His chest heaves, he usually sits down, and he acts as though all energy has been drained out of his body.  It's at this time that I scoot closer to him, still not speaking, and wait for him to do or say something.

And would you know that I've timed the past few weeks' meltdowns and that the time it takes for this whole process to occur is never less than 20 minutes?  It was one of those "I'll be damned!" kind of moments.

Now, what does this mean for me?  I manage to stay pretty calm during meltdowns, even though I'm basically screaming "WHY?" on the inside, but even I get impatient.  I think to myself that this should be over by now, that the meltdown needs to come to an end, but I'm still thinking that I'm in control.  Really, Jack's brain is in control and in the driver seat.  I'm just there for the ride.

But...I know that there is a target.  That Jack's meltdowns - when not escalated - tend to fizzle out within 20-30 minutes.  I know that expecting less is unrealistic and will likely escalate the situation.  The meltdown will burn itself out in due time, but there is no rushing it.  I just need to sit back, remain calm, and wait.  No meltdown lasts forever.

Meltdowns are definitely not one of my favorite aspects of autism, but I can take some solace in the fact that they do not last forever.  Sure, it may seem like my son may always have meltdowns, but each individual meltdown has an end.  I just have to wait it out.

Monday, November 26, 2012

Breaking Routine

Image Source: Lakeshore Learning
When the world is so unpredictable and frightening, you cling to predictability.  Routine becomes a warm blanket, a comforting friend, and a source of all that is good.  Throw school holidays, Thanksgiving, and Christmas into the mix and you've got a big potential messy situation on your hands.

We all go through this.  We balance the need to maintain some degree of the holidays for our families and ourselves - not to mention that most therapists and teachers want days off, too - so what are we to do?  Insist that the world continue in the same monotony of the everyday for our special needs kids?  I think we all know that the world doesn't work that way.

Instead, we get through the rough waters in the only way we can - one step at a time.

This Thanksgiving, we experienced something that we have not in over a year - no school, no therapies, no interventions for 5 straight days.  It left my boy confused.  Being unable to explain to him the changes that are going on around him, we simply stood close and braced for the storms.  Boy, did they come forth with a fury, too.

Really, what it all boils down to is predictability.  I guarantee that Jack would rather be doing something other than seeing his school OT.  He'd rather not be doing fine-motor work.  There are parts of therapy and school that he'd gladly pass on if allowed - things that cause him to scream and cry and meltdown on typical days - yet the absence of these events leaves a very real void and increases his anxiety.  It's not that he misses it; it's that he misses knowing what's coming.

When your body can't process the world around it in a way that you can unscramble and extract coherent, relevant information from, when the world around you speaks a language - your native language - that you have to learn like a second language, when you struggle to decipher what is being said to you, and when you feel so out of control of the events of your day, you'll cling to what you know.  You'll cling to it because it's familiar.  It makes sense.  You know it inside and out.

It's easy to see how our autistic children - and other special needs children - struggle so with change.

This holiday season, I began to look outside the box.  What can I do to try to ease this pain my boy feels when facing the unknown?  I kept trying to work with Jack's picture scheduler on his iPad, but we weren't getting through.  I needed something else.

It was then that I thought to the week prior.  I was in Jack's class, watching them do circle time.  They have a calendar on the board - all of the kids love this part - and they say the date and count the days.  They sing a weather song.  They go over their schedule.  In fact, I know that Jack relies on this schedule heavily, because he'll script it over and over again throughout the day - even when he's at home.

Then it hit me; I need to make a school board-type display for Jack's room.  One with the date, what he'll be doing the next day, the weather, etc.  I need to incorporate an element into his routine where I can go over the next day's visual schedule and then revisit that the following morning before he starts his day to reinforce it.

I was shopping for Jack on Saturday at Lakeshore Learning Store when I saw it - a vinyl wall chart that will serve all of my needs for my boy.  It's now on my Christmas list.  I can't report on how effective this whole system will be because I have yet to purchase the chart, but it will be coming.  I just have to try to make the not-so-routine days more predictable through increased reinforcement with visual schedules.  Thinking that I can breeze through the holidays on the premise of "relaxation" is a folly, but it is within my control to work towards easing my boy's anxiety.

Parents - what are your tips/tricks for easing the anxiety that goes hand-in-hand with unpredictability?

Sunday, November 25, 2012

Autism Myths Debunked!

Whether you have a child who is newly diagnosed or you are a veteran to the autism parenting game, I'm sure you'll agree that there are a lot of myths and misconceptions floating around about our kids.  In anticipation of the holidays - along with the requisite interactions with family, friends, and acquaintances - I have compiled a list of some of the most common myths that I hear pertaining to autistic children:

MYTH:  Autistic children do not interact with other people.
REALITY:  The one aspect of the DSM 5 changes that I really love is that the new criteria acknowledge the fact that children on the spectrum can - and do! - form close bonds with caregivers.  In fact, you will find that some children with autism cling to their parents as individuals who can help them make sense of the world around them and help them feel safe.

MYTH:  Autistic children don't have or want friends.
REALITY:  Autistic children may really want to have friends, but may have difficulty making them because of the abnormal social approach that they employ.  Children with autism can and do have friends.  It is an unfortunate fact that many people assume that all autistic individuals live trapped in a world in which they do not take enjoyment in the company of others.  Just because relationships with autistic individuals don't always look like they would between two neurotypical people does not mean that those relationships are no less meaningful.

MYTH:  A child who makes progress cannot have autism.
REALITY:  Autism is a pervasive developmental delay, not a developmental "stop".  Kids on the autism spectrum progress at different ways and different rates than their typically developing peers.  For the most part all children on the autism spectrum make progress, but it might take them longer to do so.

MYTH: People with autism do not look you in the eye.
REALITY:  Some autistic people have decent or even good eye contact.  A lack of eye contact is not one of the criteria for being diagnosed with autism, rather decreased eye contact (or a lack of eye contact) is just one factor that can lead a diagnostician towards suspecting autism.  It's a red flag, nothing more.

MYTH:  Autistic people don't smile and/or are never happy.
REALITY:  Autistic people feel profound happiness.  What makes them happy may not make sense to you and I, but that does not mean that they do not experience happiness.  While many of our kids may have gone through periods where their affect (their emotional expressions) may seem very flat and non-reactive, I can guarantee that autistic children do smile and feel joy.  They just express it differently than the rest of us.

MYTH:  Most people with autism are non-verbal.
REALITY:  Most people with autism are - at the least - minimally verbal.  I personally haven't known a single autistic child who never spoke a single word or word approximation.  The developmental psychologist who trained me in DIR/Floortime techniques - who has been working with autistic children for decades - told me that she can count on two hands the number of children she has worked with who never were able to produce spoken language.

MYTH:  Speaking is the same thing as communicating.
REALITY:  Like I mentioned above, many of our kids can produce spoken language.  Producing meaningful spoken language - communicating - is another issue.  As is in the case of children like Jack who are very echolalic, you might find that an autistic person is capable of producing language sufficient to recite an entire episode of a favorite TV show in it's entirety.  They might speak snippets of that script throughout the day.  Yet, when you look at what that person can spontaneously (off the top of their heads) produce, it may be single words or minimal two-word phrases.  Often, it's difficult to tell the difference if you are not used to hearing it.

MYTH:  Not speaking means not having anything to say.
REALITY:  To the contrary, not speaking or having minimal speech has nothing - absolutely nothing - to do with cognitive abilities, desires, or thoughts.  Some people have oral-motor issues that inhibit speech production.  That doesn't mean that those individuals have nothing to say, rather they may have loads to say and just need to express it in a different way.

MYTH:  Being non-verbal must mean that a child is "low-functioning".  Conversely, being verbal or of above-average intelligence means that a child is "high-functioning".
REALITY:  The "myth" of functioning levels is just that - a myth.  You might find a non-verbal child who needs a lot of physical support (AAC devices, 1:1 aides or assistance) who might be able to learn in a general education environment - or even a gifted class.  On the other hand, you might have a gifted child who is very verbal, but who can only be educated in a self-contained special education classroom.  Does requiring assistance mean that someone is high- or low-functioning?  What do those terms even mean? I'd argue that they are terms we have created to compartmentalize autistic individuals rather than looking at them as just that - individuals.  

MYTH:  People with Asperger's or HFA (high-functioning autism) are just quirky and will "grow out of it".
REALITY:  There are absolutely some people in our world who are just quirky.  Hell, we all know quirky people.  However, I'd argue that there isn't an autism parent out there who doesn't know of at least one person - it could even be an adult - who has always been considered to be just "quirky", but who seems like they are likely on the autism spectrum.  Someone who truly has autism - including  Asperger's and HFA - will not grow out of it.  They need support to learn and navigate in a world that runs counter to their neurology.  They will, however, absolutely make progress and have limitless potential, and that includes the possibility of employment and living independently.

MYTH:  All autistic people have savant skills.
REALITY:  A very, very small percentage of autistic individuals (I mean less than 1%) have true savant skills.  Like the rest of us, autistic people have areas in which they excel and others in which they struggle.  In fact, a hallmark of autism spectrum disorders is splintered development - excelling in some areas and struggling greatly with others.  The different neurology of autistic individuals might lead them to having skills in areas - like excellent, even eidetic memories - that seem very different to us neurotypicals.  Does that make it a savant skill?  No.  It just makes it something that we do not fully understand.

MYTH:  Autistic people fall to the extremes of intelligence.
REALITY:  Autistic people are like the rest of us.  They likely follow the same distribution of intelligence as the general population, but intelligence testing doesn't lend itself to demonstrating the full cognitive abilities of individuals on the spectrum.  Testing poorly is not always indicative of a cognitive deficit.

So, if you are not an autism parent, you might be thinking "What makes a child autistic if all of my ideas about autism are incorrect?"  Well, all autistic individuals have deficits and challenges in three areas - social skills, communication skills, and repetitive behaviors/restricted interests - that interfere with everyday living.  There is no one list of behaviors that a person has to have to be autistic, rather there are categories of behaviors and deficits that need to be present.  Those individual behaviors and deficits are expressed differently in each person on the spectrum.  They are all unique individuals whose abilities, needs, and challenges fall along a spectrum.

The take-home message is that autism is expressed differently in each child.  So, when someone informs you that their child has autism, go into the experience with an open mind.  Listen and learn, because you might discover that autism isn't what you imagined it to be.


Fellow autism parents, what autism myths do you want to see dispelled?

Thursday, November 22, 2012

Why I Support Autism Speaks

The autism community - like so many other communities within communities in our world - tends to be limited by forces of division from within.  We split into factions based on a myriad of ideals and approaches, from vaccine use to the efficacy of diets to one's level of acceptance of their child's diagnosis.  It threatens us, attempts to drown us in controversy, and tries to divide us.

I may be stepping into murky waters here, but I feel that it needs to be said.  I am an active supporter of Autism Speaks.

This is why I tend to hear a lot of strong and varying opinions when I tell people that I volunteer for Autism Speaks, that I serve on the planning committee for our local Walk Now for Autism Speaks, and I fundraise for my son's team in the Walk.  It's not exclusive to the world of autism; other disability communities suffer from similar division.  Yet because Autism Speaks is the most visible arm of the fastest-growing disability in our country, it tends to get a lot of press - both positive and negative.

So, why do I support Autism Speaks?

I believe in what Autism Speaks represents.  They are the largest science-based autism advocacy organization.  In the same way that I base my own medical decisions on evidence-based science, so I trust decisions regarding my son's treatment - and my own opinions regarding it - on science.  Autism Speaks doesn't "sell snake oil"; they advocate for evidence-based therapies and educational programming.

I believe in what Autism Speaks does.  Now, I can only speak for what my chapter does, but my state's chapter does some really amazing things within our community.  Their fundraising efforts go towards raising awareness - and goodness knows we need more understanding and awareness - of the realities that autistic individuals and families face in getting adequate services, education, and coverage for therapies.  They advocate for increased opportunities for housing and employment for autistic individuals throughout their lifespan.  They contribute towards providing grants to families in crisis with autistic loved ones (go to AutismCares for one example).  I don't see other non-profits stepping in to fill this very real void in the lives of autistic families.  Autism Speaks also provides educational opportunities and seminars for parents and caregivers through their Family Services initiatives.

In short, Autism Speaks supports families, autistics - both children and adults - and the community at large through advocacy and awareness programs.  Are they perfect?  Of course not, but show me an organization that is.  Autism Speaks truly works to support everyone affected by autism and to provide options - not requirements, but options - so that both families and autistics have choices in the future.

In the past several weeks, I have read many posts - most from autistic individuals themselves - declaring why Autism Speaks does not speak for them.  The reason I hear most frequently stated from both autistic self-advocates and their NT supporters alike is that Autism Speaks doesn't take their voices into account when designing their advocacy, research, and political platforms.  

I can understand and appreciate this logic and I definitely feel compassion for autistic individuals who feel marginalized by organizations, institutions, and society as a whole.  I firmly believe that the way to enact change within these organizations, institutions, and society is not to withdraw under the premise that these communities do not fully represent me or my ideals; rather, the solution is to get involved even more.  Do not wait for an invitation for your voices to be heard.  Volunteer.  Tell your stories.  Make connections.  Insert yourselves into the conversation.

That said, I think that Autism Speaks is increasingly including autistic self-advocates in the conversation, but there is more work to be done - and that's within all aspects of our society, not just Autism Speaks.  Inclusion is something that we practice and preach within schools, but not within the community.  It takes individuals who are willing to get in there, volunteer, and have the tough conversations to institute progress.  I would love to see more autistics involved with Autism Speaks.  I would love to see them help to make it their organization because it represents them, but I also would like to see Autism Speaks continue to support the needs of parents and caregivers with equal compassion.  I believe that we can - we should - be inclusive and understanding of the opinions, viewpoints, and beliefs of all and we should include autistics in that conversation.  They should have a role in the organization that helps to advocate for them and their futures.

The other common complaint I hear is that Autism Speaks places an emphasis on a "cure" - basically eliminating autistic individuals before they come into being.  I believe this to be a fallacy.  I truly don't believe that a "cure" is possible, nor do I think that Autism Speaks places undue emphasis on a cure.  What I do see is that Autism Speaks helps provide research grants that help identify autistic children at younger and younger ages, thus lowering the age of diagnosis and providing a larger window for children to receive that ever-so-beneficial early intervention.  That's not curing, in my opinion.  Instead, that is working to mitigate the disabling aspects of autism.

I think that it's important to remember that one family's autism is not the same as another's.  Nor is the mindset of a single autistic individual or autism parent or service provider representative of the whole.  No one organization can truly speak for everyone.  We all have our varying opinions, but we can unite under a common goal - to promote understanding and a limitless future for our friends, family, and loved ones on the autism spectrum.

We don't all share the same opinions, but we can absolutely respect others opinions, attempt to see their point of view, and consider that they have every right to feel as they do.  We can also support each other because - well - we're ultimately on the same side.  We all ultimately want the world to be a better, more understanding place for people on the autism spectrum.  I haven't met a single person through Autism Speaks for whom that isn't the goal.

Most of all - and on that same note - I believe in the many dedicated and wonderful people I've met who work for and volunteer their time with Autism Speaks.  Because an organization is only as strong as its people.  Because there are some great people working with Autism Speaks who are truly trying to make the world a better place for people on the autism spectrum.  Because these people put their hearts and souls into advocating for our kids.


We may not see eye-to-eye on this issue, but that's okay.  I stand with Autism Speaks.  That doesn't mean that I stand in opposition to anyone else.  You don't have to stand with them, but I implore you - stand for something.  Don't stay at the back of the room complaining about the injustices of the world around you when there is so much that you can do. I know that each and every one of you can do just that.  Get out there and do something to make the world a better place.  Be an instrument of change.

I do ask that everyone keep the comments civil, because I know that this is a hot-button issue, but I appreciate the contrasting opinions, lively debates, and am eager to hear them.  Just be prepared to hear responses back!

Wednesday, November 21, 2012

An Autism Mom's Guide to Hosting Turkey Day Success!

I've been at this autism parenting thing for a little while now.  I know that being a special needs parent is stressful, but add in the holidays - the dreaded holidays with their transitions, breaks from routine, and sensory nightmares - and you're liable to become one hot mess over it all.  Throw into the mix a child with social, communication, and sensory challenges and - well - you get the idea.

I've learned a few tips and tricks to help you get through the holiday without either A) draining every bottle of wine in your home, or B) losing your s#!% and going off on every man, woman, and child within earshot.  So, here are the keys to a successful Thanksgiving - Reinventing style:

1.  Plan ahead.  I'm talking weeks ahead.  Make lists of what you'll prepare.  Then make a list of all of the ingredients you'll need.  Once you've done that, make a schedule for when you'll cook everything, right down to the time.  Plan to leave an extra hour (or more!) in that cooking schedule just in case the world starts to come to an end in your house.

2.  Let guests bring food.  Now, if a family member offers to just take the meal over, I can understand saying no, but if someone asks "What can I bring?" you better answer.  Outsource elements of the meal to these willing helpers.  It will be less stress for you and it will allow people to bring elements of their holiday favorites to the party.

3.  Don't have unrealistic expectations.  Expecting your sensory seeker to sit at the table during an hour-long meal with no protest - and no planning - is probably not realistic.  Likewise, Thanksgiving is probably not the time to try to force a new food on your kids.  If you set unrealistic expectations, you will be disappointed.

4.  Better yet, don't have expectations.  If your child has accepted turkey once and you just KNOW that he'll eat it again on Thanksgiving Day, you might get let down if your child refuses.  Even if your child is able to say "Happy Thanksgiving" to you, he might or might not be willing to perform under pressure.  Going into the day with an open mind will help you avoid disappointment.

5.  Bear in mind that the sensory and social challenges will be greater.  With grandparents, cousins, family and friends roaming about your child's sanctuary, your kiddo will likely be a little on edge.  Keep that in the back of your mind and provide your child a safe space to escape.  Have your child's fidgets and/or comfort objects ready and available.  Help your child navigate social challenges by facilitating interactions (if necessary).

6.  Be your child's voice when necessary.  Have a kiddo who has communication difficulties?  Help your child out by stepping in to communicate his needs if he cannot.  Jack can't communicate what he needs verbally - for the most part - so we see anxiety about situations or displeasure come out in behaviors.  Help your child by communicating to others when he might need a little space.

7.  Remember your child's sensory diet.  It's easy to forget the little things on Thanksgiving Day when you're hurrying around getting a meal ready, but make sure to build sensory activities into the schedule. Does your child need to swing several times a day?  Better up that amount on Thanksgiving.

8.  Thanksgiving Dinner doesn't have to equal turkey.  Got a kiddo that will only eat cereal bars?  I do, so Thanksgiving dinner just might be a blueberry cereal bar for Jack.  That's not a bad thing.  Whatever it takes, right?

9.  Be your child's advocate.  Is a well-meaning family member trying to force your child into something - like trying a bite of that dreaded combo food - that you know might cause a meltdown?  Is someone trying to make your child sit at the table longer than should be expected for him?  Say something!  A meltdown will be worse than reminding your family to go easy on your child.

10.  Remember what's really important.  Your kid might be stimming, might be playing an iPad, or might be noshing on a cereal bar while you tuck into the turkey, but that's okay.  The important thing is for you all to be a family.


From the Reinventing family to yours, I wish each and every one of my readers a very Happy Thanksgiving filled with the blessings of family, friends, and loved ones.

I Know What You Were Doing Last Year (Part 2)

Before you go further, I implore you to read this post:

It served as an eerie prelude to the scare that we would experience just weeks after I hit "Publish" on that post...


Several Days Before Christmas, 2011

You would think that one would learn from her mistakes; however, the human learning curve is regrettably slow.

I had just returned from the grocery store.  Brian had just put a serving of French fries in the oven for Jack's dinner.  It was dark, rainy, and not at all the Winter Wonderland so many of us long for in postcards and pictures.

Being the good husband that he is, Brian decided to head into the garage to help me unload the car.  I had just done our big shopping trip that would tide us over until after Christmas Day.  The trunk was loaded up with sweets, snacks, and poultry for roasting.  As I loaded up my arms in anticipation of my return trip inside, I heard that sound.  That sickening sound that makes your heart drop out of your chest.  Jack's desire to constantly keep doors closed had led him once again to closing the door from the garage into the house.  He was in there and I was out here.

As I turned, I saw Brian in the garage with me.  It struck me that this surely meant that Jack had once again locked us out of the house.  We have the dreaded doors that will easily lock when closed.  He was inside and we were trapped outside by a little boy who could not open doors.

Adding to the suspense of the situation was the fact that our oven was still running.

I ran across the street.  We were fortunate that our newest neighbors - who had moved in days prior - were home so that I could ring their doorbell frantically, explain that my autistic child had just locked me out of the house, and desperately dial my in-laws so that they could bring a spare key over to my house.  All the while, Brian was standing in the rain on our deck, watching Jack through the window - who was blissfully unaware of our absence, might I add - and preparing to hurl one of our deck chairs through our massive living room window.

A short time later, my father-in-law arrived with a key, we got inside, Jack was just fine, and our house hadn't burned to the ground.  However, the experience of being locked out by my child two holiday seasons in a row had made me a believer.

Now, the brevity that I use in this account really does not accurately depict the terror I felt in knowing that my child was locked inside my house with the oven on.  It could have ended badly.  It was a lesson in remaining vigilant and aware of the unique safety issues we face with our special needs children.

Instead of collapsing into the fetal position in fear - though I felt the desire to do just that upon hearing the "click" of the door latching while I'm on the opposite side - we began to troubleshoot the situation.  We looked at it in a realistic manner and determined that for our son's safety, we needed to make some changes:

1. We went that night to the hardware store and purchased a lock box to install in our garage.  From there forward, we would always have a back-up key much more within reach than the last.

2.  As our door locks aged, the door knobs got to the point where we have to turn the knob in order to close the door.  Once that particular exterior door reached that point, we simply didn't change the doorknob.  We left it in place, as it would make it so that Jack couldn't simply lock a door by pushing it closed.

3.  We don't know our neighbors well enough to trust them with this, so we still have a spare key at my in-laws' house (they live 5 minutes away).

4.  From now on, all trips into the garage involve UNLOCKING the door as a first step.

It was a lesson learned, but one that we needed to learn before an accident turned into something more serious.  It was definitely one of those scenarios that we never imagined having to plan for, but safety issues - even unique ones - crop up and we must be prepared.


What kinds of unexpected safety issues have arisen with your children?  How have you attempted to plan for those situations in the future?

Tuesday, November 20, 2012

Thanksgiving, As Experienced By a Special Needs Mom

I'm over at Hopeful Parents today!  Go check out my post on what I am thankful for this year and leave a comment about what you are thankful for today.

Happy Thanksgiving, everyone!

Monday, November 19, 2012

Reinventing Thanksgiving

This is, strangely enough, the 3rd Thanksgiving you'll find documented on this blog.  The first was filled with the frivolity of a woman who was both in denial and unaware of what she was facing at home and what storms were to come.  The second was a reality check of a departure from the life and holidays I expected to lead.  It was, regrettably, one of the darkest of holiday seasons in my home.

This year, I feel a rebirth of sorts when it comes to the holidays.  We have not left behind many of the issues we faced before - like feeding struggles, sensory challenges, and the like - but we have gained a greater understanding and acceptance of the way our lives will be from here forward.

We are reinventing Thanksgiving.

Will Thanksgiving in our house look as it does in a typical home?  Probably not.  There will be the family at the table with Jack nearby playing his iPad or arranging his letters.  He may be jumping on his trampoline or watching an episode of Super Why.  His meal will likely be comprised of a cereal bar (the only food he requests these days) or some Cheerios.  He won't understand what we are doing, that it's a holiday, or that Thanksgiving even has a special meaning.  He'll probably be focused on the fact that what we're doing is a departure from his routine.

And that's okay, because ultimately the important thing is that we are together.  We are all under the same roof with family who love and support our angel.

When I go Black Friday shopping after gorging on turkey, dressing, and pumpkin pie, I will not be buying action figures and play sets for my boy.  I'll be buying letters, a timer, a toy microwave (his newest "thing" and the one item I've already found), and sensory objects.  Most of the actual "toys" I purchase will come from the infant and young toddler section.

Unlike last year, I will not feel sadness for this, because the important thing is that he's happy.  This year, instead of buying him toys that he will not use in hopes that he'll "figure it out" and play with something "age-appropriate", I will get him what he will enjoy.  To hell with "age-appropriate", I'll say.  Christmas is not about therapy or progress or ADLs; it's about joy and happiness and being a child in whatever form that may be.

Really, it's not reinventing anything.  It's letting go of the postcard image of the holiday and embracing the child that we have.  It's not expecting him to conform to a holiday that caters to everyone else; it's being flexible, understanding his needs, and meeting him in the middle.  It's allowing him to just be.

If we do that, if we throw away expectations and allow ourselves to be open to what may happen, we will find peace this holiday season.


To you and yours, the Reinventing family wishes you a very Happy Thanksgiving and safe journeys to wherever you might call "home".

Thursday, November 15, 2012

One Label, Many Causes, Many "Autisms"

Earlier this week, my attention turned to the TV suddenly when I was on the stationary bike.  I was watching the Today Show as I usually am during my morning workout, but I saw the word "autism" flash across the screen and as a mom of an autistic child, I stopped.

Now, I knew what was coming.  There are only certain stories that make the headlines when it comes to autism.  No one will report on the stories about how a certain type of speech therapy improves communication skills, nor will they discuss how a particular method of ABA improves social skills or behavioral outcomes.  Instead, the stories that flash across the screen are those that will play into the fears of the general populous and, therefore, bring in ratings as they cause readers to pause.  They are, of course, stories about the causes of autism and, by default, ways in which you can avoid having an autistic child.

The flavor of the week just happened to be a link between influenza infection during pregnancy and autism.  In a way, I roll my eyes at each of these studies as they are published and reshaped in the words of the media to reflect a proven truth instead of a correlation.

Because that's all they are - a correlation.  A set of numbers that in some way relates to another.  There is nothing in the data that states that any of these factors actually cause autism.  However, correlations don't sell newspapers or earn ratings.  Overblown claims that cause hysteria, confusion, or all of the above are what sells.

Unfortunately, it doesn't really help anyone, not expectant parents, parents of kids on the spectrum, or the autistic individuals themselves.

You see, I don't believe that we'll ever really find one single cause of autism or any one factor that absolutely raises a child's risk factor versus another.  It all seems too specific to the child with no one way to determine each child's particular cause.  It's probably unique for them all.  In Jack's case, I imagine that there is a strong genetic component to it.  I have another family member on the spectrum.  I know that isn't the case with every child or every family, though.

In my case, most of the recent "studies" don't seem to apply to Jack's situation.  I did have a flu shot in my second trimester.  I never got the flu.  I was in my late 20s when I got pregnant with Jack.  My husband was as well.  I was so paranoid about taking medication that I didn't take so much as a single Tums tablet for my unending heartburn until I had to take medication to stop my contractions at 32 weeks.  I followed every pregnancy "rule".  I still had complications.  I still had a child with autism.

The "studies" don't indicate "causes".  Not by a long shot.

Another reality I think we all must face is that while our children are all united under a single diagnosis - autism - they all have such different presentations of that diagnosis.  There are kids that are much higher functioning than mine.  There are others who are lower functioning.  There are many still who fall into that moderate area - placed smack dab in the middle - like Jack.  All of our kids have the same diagnosis, yet they are all so different.

Could it be that we are looking at a case of many different causes, many different presentations, and many different "autisms"?  I'd say it's possible.  Not certain, but possible.

In essence, what I'm trying to say is that the "cause" of autism is more complicated than having the flu or being of a certain age.  There are probably many, many factors involved in what has produced autism in each of our children.

Moreover, the take-home message should be that we should not take what these studies say to heart.  Even more important than this, we should not ever blame ourselves for our autistic children.  The fate of our children - special needs or neurotypical - is under our influence, but ultimately out of our control.  Nor do we need to assign "blame" for our children being autistic.  Our kids are who they are, unique people with special needs that don't need to be blamed on anyone else.

Though I'll take responsibility for my kid's cuteness any day.

So take the stories and studies and papers with a grain of salt.  Finding the cause is important, but not more important than helping our autistic children and adults have the best educational, therapeutic, and social programs to help each and every one of them live the best, fullest, happiest lives they can with bright futures on the horizon.

Wednesday, November 14, 2012

Mental Health Days

It feels like days since I've touched this keyboard.  It has been days.  As much as writing feels like the catharsis that I so desperately need some days, the connectedness of our modern lives seems to wear down on me at times.  Like my boy's weighted shoulder snake, I feel like I'm dragging the weight of the world and all of it's injustices on my shoulders.

After a week that I was very proud of - my first syndicated piece and saying some very meaningful things in the process - I needed to back off for a few days.  I needed it because the world seemed so full of anger.  Not here and not on the Reinventing Mommy Facebook community or Twitter page, but elsewhere.  Everywhere.  Not that I didn't expect it, but after the election, public opinion seemed to sway one of three ways - boundless hope, endless despair, or anger.

It was bringing me down.  Life goes on despite what we as Americans would like to think regarding our decisions for elected officials.  I know this; however, it seemed like social media was abuzz with the elation of many and the anger of just as many.  While one serves to unite and lift the spirits, the other serves to divide.  Both are opinions - protected by our government - but I can elect to bow out of the arena temporarily until the anger subsides.

As always, it does.  I am convinced, though, that a good way to take a break - a staycation, if you will - is to disconnect for a few days.  That doesn't mean that I was suddenly a hermit.  We did the usual weekend/early week activities - special needs play group, school, therapy, plus my outside commitments and volunteer work - and I still communicated with the outside world via email, phone, and text, but I checked out of social media for a few days.  We special needs parents bear the weight of our children on our minds and shoulders, so it is okay to step away from the worries of the world for a few days.  I gave myself permission to step back and let life happen around me with me and my boy just moving independent of it for a few days.

It was refreshing.  In the world of social media, it is easy to say what you mean - or don't mean - in a matter of seconds with almost no inhibitions or filter to the outside world.  How many times do we all send a Tweet or Facebook status update that is so frivolous that it seemed to be more of a waste of the sender's time rather than a conveyance of actual information?  Now, add to that mix a nation divided by politics and you get a real mess.  It's easy to shoot off your opinions without giving any real thought to whom they might affect when the only thing standing between you and broadcasting your opinion is a keyboard.

Yes, everyone has the right to speak their mind and voice their opinions.  I have the right to check out of it, too.  I had to exercise that right for a few days.  To back out of the fray.  I had heard enough.  I decided that life is more than quips delivered via a computer or a cell phone and I decided to check out for a few days.  Not that blogging directly intersects that world, but I took a break from writing for a few days, too.  To clear my mind.  To remind me what I'm fighting for.  To give me clarity and peace and the foresight to try to pass that on to others.  To help me share this journey and encourage others to share their own.

And here I am - refreshed, relaxed, and ready to tackle the world, or at least the holidays.  I challenge you; if you're feeling overwhelmed, angry, or tired, try to take a few days away from social media.  Seriously.  It served me well to let go for a few days and it might do the same for you.

Thursday, November 8, 2012

Can't Judge a Bus Driver By His Tattoos

Image Source: Wikipedia
This blog is all about honesty.  While I don't share everything about my life, I do share most.  This is a recount of one of my recent moments that I am not as proud to share, but that is important to tell nonetheless, because sometimes the true measure of strength is being able to say that we were wrong.

We've been through a few drivers on Jack's bus route this year.  Really, I'm not terribly sure why, because the kids seem very calm and easy-going, at least when they get to my house.  Towards the beginning of the school year, I had heard that we would be having another bus driver change, so I awaited the morning that the change would take place.  Historically, bus drivers on Jack's route have followed a certain mold:

In their 50s - 60s
Coordinated "World's Best Nana" T-shirt and Sweatpants
Quintessentially Southern (drawl, calls all of the kids "sweet baby" or "sugar")

You know, the grandmotherly type.  So, the morning that we would be getting a new driver, I didn't expect anything but the above characteristics in a driver.  When the bus came whipping around the curve towards my house and halted, opening its doors to my baby and myself, I came face-to-face with what I can only describe as the opposite of the traits listed above.

Instead of the "grandmother", here is what I saw:

Heavily Tattooed
Cargo Shorts
Motley Crue T-Shirt

Now, I consider myself pretty open-minded, but I'm ashamed to look back at this incident and say that I wasn't open-minded at all.  I try not to judge people, and I would normally have been very open to being friends with someone who looked similar in appearance.  After all, being male, goateed, or tattooed doesn't preclude you from being my friend.

Yet, I am also finding that parenthood can take the most principled person and throw that all out the window.  It's one thing when you are talking about yourself; it's another when it's your child.  Suddenly, you find yourself being judgmental in a way you never before imagined.  It's involuntary.  We all do it.  We don't do it because we are jerks or hypocrites.  We do it because we're parents and, as such, we have an absolute obligation to protect our children.  I think it puts us constantly on guard.

It wasn't just his appearance; it was that he was a younger man.  Now, I watched far too many Dateline episodes where they did the "To Catch a Predator" segment.  Here is my baby boy - my angel who cannot tell me if something's wrong and what happens in his day, or even what happened just a few minutes prior - getting on this bus with someone who doesn't seem like the kind of person that I would want driving my 3-year old to school.  For some reason, my own internal prejudices have me trained to feel comfortable with "Grandma" driving the bus rather than a member of Motley Crue.

Not that there's anything wrong with Motley Crue - I actually went to one of their concerts about a decade and a half ago.

Silently, I put my little boy on the bus.  He went easily with the driver - he has no stranger danger sense, so it didn't shock me - and was put in his seat.  As the bus pulled away, I sprinted inside to my phone to call Brian.  He was in the car on the way to the train station, heading to work.  Obviously surprised to hear from me so early in the morning, I recounted the scenario to him.  We both agreed that we didn't have reason to suspect anything other than good things from this new driver, but I was still uneasy.

I texted my mother-in-law, who works at Jack's school, and asked her to just let me know that Jack got to school okay.  Eventually, she did, and I went about my morning relieved, but still uneasy.

Looking back on this scenario, I can see where many of you might look negatively upon me, and I completely understand that assessment.  However, when you are a parent, it is hard to not give in to irrational fears from time-to-time.  We go into protect mode for our kids.  It's difficult to circumvent that hard-wiring.

As time went on, my fears were determined to be unfounded.  Rather, the bus driver would great my boy each morning with an enthusiastic "Hi Jack! Come abroad and let's go to school!"  He was patient, understanding of my boy's limitations, and guiding him to his seat each day before lifting him up and plopping him down with a dramatic "plop!"  Jack loved the whole of the routine.  Then, turning to head back to the front of the bus, the driver would put his hands up in anticipation of a high-five from each child as he passed.  They all broke into smiles as they slapped his hand in succession.  They loved him.

I felt awful.  I still do.  I felt so ashamed that I thought that this man might be anything other than capable based on his appearance.  It's something that we do every day.  We don't share these thoughts because of the shame associated with it, but we all do it - unconsciously.

It is good - and common - that we can say that our prejudices are so often wrong.

Instead, a few weeks later we found out there would be another driver change on Jack's bus.  The "cool" driver had multiple routes and they were taking this one away to lighten his schedule a bit.  This time, I was sad for the kids.  I know that Jack wouldn't really notice the difference, but the other kids seemed to really connect with this guy.  Would the next driver be as fun-loving and easy-going with the kids?  Would the children's faces light up when they high-fived the new driver?  Would he/she high-five them at all?

The replacement driver has been much more business-like, and the spirit of the bus is dampened.  She's a good driver, but not quite the same spirit.  I wish that the kids still had that spirit with the driver that originally gave me so much pause.

I guess you really can't judge a book by it's cover.

What Autism Has Taught Me About This Election

I never considered a difference of opinion in politics, in religion, in philosophy, as cause for withdrawing from a friend. 

~ Thomas Jefferson


It's the day after the election.  According to the popular vote, about half of us are seeing the candidate we backed enter a second term while the other half of us are - well - not.

What I'm seeing on social media reflects that demographic.  I'd say that a third of the posts I'm seeing seem to optimistically hail the result as a victory for the country.  Another third seem to be apathetic and - rightfully so - highlight the fact that the world will indeed keep spinning regardless of the result of this election.

It is the other third that disturbs me a bit more, not because of their understandable disappointment at their candidate's loss, but at the reaction.  I hear things that resemble the following:

Time to move to Canada.

It's all downhill from here.  We'll all be out on the streets!

There goes 4 more years of nothing getting accomplished.

Our country is doomed.

As you can see, these reactions tend to have a common theme.  It's one of a hopeless scenario in which we are powerless to defend against the onslaught of bad tidings that is coming our way.  The only solution, therefore, is to run away from your problems ("move to Canada"), be an unwavering voice of opposition ("I'll disagree with anything that party wants to do, right or not"), or simply give up ("I'm just going to sit here and wait for bad things to inevitably happen").

So, where does autism come into play?  Among autism families, you hear these things from time-to-time as well.  You'll hear of people that claim that the situation is so hopeless that there is nothing to do but be miserable about it.  If having a child with autism has taught me nothing else, it has taught me the power of one.  One voice.  One person.  One citizen willing to work their tail-off for what they believe in.  When my child isn't getting what he needs, I don't just roll over and say "the system sucks".  I fight!  I advocate for his needs and if he doesn't get them there I go elsewhere, because I believe it's within my power to find some way to help my little boy.

If there is a bad situation, the solution is simple - get out there and do something about it.  Don't wait for someone else to do it for you - like the president or Congress, because you'll be waiting a while! - go do it yourself.  That is why I'm so disheartened by the people who simply give up.

Because we can't give up.  Not now.  Not while there is so much work to be done.  Not while there are people out of work.  Not while there are people - children - who go hungry.  Not while there are families without adequate healthcare.  Not while the situation is desperate for so many.

Okay, so you think the lot won't improve for these folks because some politicians in Washington can't get the job done on a national scale?  What are you doing on a local scale?  Don't think globally; think about what's taking place in your own town.  So, there are folks who are going hungry and need a job. You might not be able to create a job, but perhaps you could give them some food?  Perhaps you could look with more compassion at the person who is paying with Food Stamps at the grocery store, because she is doing all that she can to put food on the table for her family.  Perhaps, you could find ways to reach out and help the needy.

See, it didn't take a politician to brighten the day of that person at the grocery store or that lady at the soup kitchen!  All it takes is YOU.

Now, we have to move forward as a nation.  We need to demand that our leaders work together - and working together doesn't mean voting with party lines, it means doing what is right - so that our nation can move forward, because we have a lot of work to do.  We have people who are struggling with unemployment, a lack of adequate healthcare and education, and families who need something - anything - to help them get a leg up on the situation.  It is our responsibility to help our fellow Americans and create a nation in which we all can thrive.

So don't despair if your candidate didn't win.  It is within your power to create a more just world, if only we can all put aside our differences and halt the rhetoric and roll up our sleeves to make it happen. Making the world a better place is within your power.

Let's get started.

Wednesday, November 7, 2012

A Parent's Perspective

I'm also featured today over at Notes from a Pediatric Occupational Therapist, written by pediatric OT Abby!  I'm discussing what life is like raising a child with autism, what gets me through my day (yes, chocolate and wine come into the discussion!), and what I look for in a therapy team.  Go check it out!

"Why Does it Take Your Kid So Long to Get on the Bus?"

Big news - BIG NEWS - folks!  I'm being syndicated today over at BlogHer!  I'd be ever so appreciative if you'd go over there, take a peek, and then maybe (if you're feeling particularly generous) leave a comment.  Thank you so much for reading as I describe to the masses the epic battle between my neighbor's and Jack's school bus:

Tuesday, November 6, 2012

One Pool, Two Pool, Old Pool, New Pool

I'm over at the SPD Blogger Network today!  As some of you might know, Jack does aquatic physical therapy to help with his motor planning, coordination, strength, and hypotonia.  So, what is one to do when our normal location is in limbo for a few months?  How do you help a kid with transition issues handle moving from one pool to another, and then back again?

Check out our solutions in progress by clicking below:


I sit, this cold couch serving as my support.
The to-do list growing
Full of the demons I need to slay
In my quest for a more just world for one boy.
The one who gives me Hope.
It's about more than he.
It's about each child, adult, and person like him.
They are 
And Many.
Must advocate at school for the help he needs
For the reports I need
For the things they need.
Must make phone calls
Send emails
Remember the errands and housework, too.
Must juggle Therapies
Where do I come in?
It's a marathon that never ends.
Must fight the injustices of a world
That doesn't understand
And doesn't always try to do so.
Yet the world doesn't open their hearts as easily
Seeing the deficits
Not seeing the victories.
Seeing the flapping as a "maladaptive" behavior
Rather than an expression of Joy.
And the list keeps growing
Advocacy keeps calling
I must keep Fighting.
Until my hands ache and my tongue is tired
Just keep Fighting.
Because if I don't
Who will?

Monday, November 5, 2012

"Fair Is Everyone Getting What They Need"

There is a quote that I love that is often used in special education circles.  I have been unable to find someone to attribute this quote to, so if you know, please share!  The quote goes a little something like this:

Fair isn't everyone getting the same thing.  Fair is everyone getting what they need.

I have avoided this post at all costs this election cycle.  I try to refrain from expressing political views on my blog, on Twitter, and on Facebook - both on my personal account and my blog's account.  We all have friends and family who would - no doubt - blast us for our individual views and I do not wish to engage people I care about in a heated debate.  I don't like being quite so polarizing.

I also choose to not respond to comments that I find inflammatory, yet as this election draws to a close I feel that I need to say something in response to the comments that I see on Facebook.  You see, my new feed is filled daily with comments that - honestly - make me feel disappointed in the charity and compassion of my fellow Americans.

A lot of what I see is half-truths from people who have been listening to people - the wrong people - talk, people who have little knowledge about the things on which they claim to be "experts".  I read comments that describe how we are each responsible for taking care of ourselves.  That affordable healthcare isn't a right.  That we need to decrease government involvement in our finances, healthcare, and right to bear arms while also increasing government involvement in social reforms.  That anyone who receives government assistance is, in fact, a "freeloader".

While the other statements get to me, it's the last one that bothers me so.  I have a hard time with people who publicly (yes, Facebook is public) or privately (one of the presidential candidates comes to mind) make the blanket claim that people who are on public assistance programs - like Medicaid - are living off of someone else's hard-earned money because they are either lazy, unmotivated, or otherwise less than the rest of us.

When they speak of people on public assistance in such a negative way, I feel confident that they speak this way because they do not personally know anyone who depends on public assistance.  Except that if they know me and know my son, they do know someone on a public assistance program, because my son gets Medicaid under a Katie Beckett Deeming Waiver based on his disabilities. (Neither Brian or I are on Medicaid, just in case you're wondering.  Jack gets it through a program that waives our income based on the severity of his disabilities and his level of care, because we otherwise make way too much to qualify.)  Yet, people make blanket statements so freely, assuming that everyone who needs help isn't doing it right and that healthcare is something that everyone who works hard can easily afford.  After all, if it's all that you know, then why think any different?

The problem with this argument is two-fold.  First, to the average person who has no chronic conditions, no disabilities, and no other issues other than the occasional acute illness, most healthcare packages are affordable.  You go to the doctor once - maybe twice - a year, depending on how lucky you are when it comes to avoiding illness.  You might take a medication monthly.  Your life involves no expensive testing, monitoring, or specialist care.  Your healthcare plan is adequate and - for you - cheap and affordable.

Only this isn't the way life is for everyone.  Do you know how much money my son's therapies cost out-of-pocket each year?  $4000/month.  That doesn't include the programming that isn't considered eligible for Medicaid/insurance coverage, like behavioral therapy or social skills groups.  We make a decent living, but without Medicaid my son would not get the coverage for the therapy he needs to learn and grow - and he does need this therapy to learn and grow.  Without it, he regresses or plateaus.  Without it, he will be wholly dependent on others - including government assistance - to provide for his needs as he will be unable to hold down any kind of job.

For those of you who feel like I should take of my son's care on my own - that it's no one else's problem but mine whether I can afford his care or not - I ask you this, who can afford $4000/month+ of medical bills for an entire childhood?  That's 2 house payments for many people.  With Medicaid, that amount gets reduced to zero.  Our insurance only provides coverage for 1/5 of the number of sessions Jack needs annually.  So, without Medicaid, Jack wouldn't get the care he needs and deserves - pure and simple.

Second, there is the myth of "freeloading".  I'd argue that the majority of people on government assistance aren't on it because they are lazy or unmotivated, regardless of what any candidate or talking head would have you believe.  My son is most definitely not the definition of freeloading or lazy.  In fact, I'd argue that he works harder than just about anyone I've ever met.  The simplest things, like eating and moving and learning, require an incredible amount of work on his part.  This isn't the example of someone who is lazy.  This is the example of someone who is inspirational and deserving and definitely not a freeloader.  Just because he needs Medicaid because some person at an insurance company doesn't want to cover what he needs to grow doesn't make him a freeloader.  It makes him a victim of a broken healthcare system.

Here's the thing - there is abuse in every system.  No matter how hard we try, there will always be people who abuse the system, but is this a reason to strip others of the programs they so desperately need?  Where do we draw the line?  Do we eliminate assistance to all with the hopes of deterring the few?  With politicians who seem to be so devoid of integrity (and they're on both sides of the aisle), do we honestly think that they will preserve government assistance for those without a voice, like my son, or will they cater to constituents who vote?  How do we determine who is and is not deserving of the chance at an independent future?

What really bothers me is that it is these same people who also claim that their religious beliefs drive them to loving their neighbor as themselves.  They claim that all life is sacred while also claiming that - once here - a person doesn't have a right to affordable healthcare.  How is that respecting all life?  They claim that we should remember that in this election, yet blanket statements about freeloaders seem to be the opposite of loving your neighbor as yourself.  Statements like that seem woefully full of judgement - judgement on a life and circumstances of which they know not.

I think what disheartens me more than anything else is that it seems as though we have become a nation of individuals rather than a nation united.  We show contempt for our fellow man rather than compassion.  We need to remember that we didn't get where we are as a nation by isolating ourselves from our fellow Americans, rather we achieve greatness when we work together for the good of us all.

We also must remember that our society is ultimately judged - both globally and by history - by the way in which we treat all of our citizens, including the most vulnerable.  To me, some of these issues aren't a matter of partisan politics; they are a matter of human rights and decency towards all.

We ultimately each have a decision to make, and that decision is very personal for each of us, but be prepared to take responsibility for your decisions, whatever that may be.  Just remember that your decisions expand beyond your own family.  Exercise your right to vote, but take responsibility for your decisions and the implications they have for all Americans.

Remember, too, that all of us have different needs.  Go vote and make your voice heard, for yourself and for those who cannot speak for themselves.

Sunday, November 4, 2012

Finding Santa

I'm over at the SPD Blogger Network again today (I just love hanging out over there!) and with one major holiday behind us, I'm talking about tackling another one of the season's sensory challenges - visiting Santa - and my quest to find a way for my boy to be comfortable.

Check it out at the link below:

Saturday, November 3, 2012

Sitting It Out

So, I've taken a challenge to blog every day this entire month (check out the "NaBloPoMo" button in my sidebar for more info), which means that you get weekend posts for the month of November!  They might be short, but they'll be mighty (hopefully!).

This morning, I should have been at the starting line of a race, but alas, my knee gave out.  I had registered a while back, though the money is going to one of my favorite causes - Autism Speaks - Georgia Community - so I don't feel like there's really anything lost.  Still, as a runner, I'm a bit pissed that my body disagrees with my spirit on this morning.

I tried to rehab it back this week.  I tried walking on the treadmill, but each step sent a shot of pain through my knee.  I then tried to ride the stationary bike instead, which worked well until I accidently slipped off the pedal and hyperextended that knee.  That stung a little bit.

I have to remember that I'm not 21 anymore (not even close).  I've been through caring for a child who takes a toll on my body physically; I always say that special needs parenting is one of the best workouts you can do!  So, while I'm sad that I can't run this morning, it's a reminder that I'm not as young as I once was, but that's okay.  I've grown, life has taken it's toll, and I can always try again another day.

Instead of running, I'm doing my usual Saturday morning thing - taking Jack to his special needs play group and special needs music class.  I'm not pounding the pavement, but maybe I'm enacting change on a much smaller scale.  Perhaps this is the day that I learn something new about my boy.

Perhaps this is the day I learn something new.

Friday, November 2, 2012

"He's Recording"

The para-pro in Jack's class recounted to me an exchange during Jack's weekly music therapy.  It was one of those profound moments where I thought, yes, these gals get my boy!  They understand this!  Through the words of Jack's school music therapist, I was able to find the words to describe an important aspect of my boy's learning style.

Jack was in music therapy, which is done as a group session with his whole class.  The music therapist was trying to get Jack to respond to something, but he wouldn't.  She tried a few times, but he stood still and silent.  She looked at Jack's para-pro and said, "It's okay.  He's recording; playback gets disabled when he's taking it in."

At first, it made me smile, because she's right.  My boy has an incredible memory and it does seem like he goes into "record" mode at times, but so many people misidentify that as a lack of attending.  He's staring off into space, he's non-responsive, and that seems to indicate to people that he's not taking it in, but they're wrong.  They're so wrong.  It doesn't look like learning the way that everyone else does it, but it's learning nonetheless.

I've mentioned before that I believe that Jack does basically "record" information - not unlike a computer, though that's a woefully inadequate description - that he can recall when he needs it.  Now, getting that information out in a way that anyone else can understand is another thing.  Comprehension is another thing.  However, getting the basics of the situation - the sheer facts - is something that he has mastered.  It is as though he takes a snapshot and remembers every object, word, and detail of the situation, but he doesn't understand it.  It's like he hits "record" and imprints each word into his brain, even though he doesn't comprehend the words he's filing away.

It is seemingly the essence of echolalia.  His memory files it away for use at another time - when he needs comfort, self-stimulation, or simply something to fill in the blank.

But the power of that memory!  Can you imagine being able to just take in the words someone says and imprint them permanently to memory after one experience?  Especially for our kiddos on the spectrum with challenges with expressive and receptive language, like my boy.  I think of it like this - imagine going to France.  Imagine that you don't speak French, but that someone tells you to recite a conversation in French in it's entirety after hearing it only once.  It would be difficult enough in English, but seeing that English words have some meaning, you might can use that meaning to string together the conversation, even if not exactly as originally spoken.

Now, if you didn't understand the language, how would you manage?  You would have to remember the conversation not based on meaning, but based on the sounds that you heard.  That is infinitely more difficult, but infinitely more spectacular.

For kids - mine included - who seem so defined by their deficits, it is important to remember that something that is considered a "maladaptive" behavior can have a silver lining.  Looking at the positive in that behavior - the sheer power of my child's memory - reminds us that there are strengths mixed in with the challenges, if we only have the courage to look outside of the box of conventional thought.

He learns differently.  He'll always learn differently.  He'll always process differently.  It is the teachers and therapists like this one who look at what would be considered a lack of attention by most and who choose to see it as a learning style.  He's recording, and that's okay.

Thursday, November 1, 2012

Halloween 2012

I had hoped that this would be a post about success, about a year in which we accomplished slightly more that the year before.  I had hoped that this post would be one of triumph in the face of sensory challenges and a holiday that my boy doesn't understand.

It's not.  In many ways, Halloween was harder this year.  Jack seemed to have an awareness of the fact that people were wearing costumes (he simply didn't notice last year), which really upended his world.  In fact, he was really upset yesterday when he got to OT and found that most of the therapists at the clinic were dressed up.  I guess I can understand his fear; if you don't have any understanding of Halloween, then you won't have any understanding or anticipation of seeing people dressed vastly different than the otherwise would.

Last year, we were able to take Jack to 3 houses before fatiguing.  This year, he went to 1 1/2 - and I say the "1/2" because we were going to just go home but were dragged to the house anyway by a relative - which is less than last year.  He really did not want to go, either.  In a way, perhaps I shouldn't have made him go Trick-or-Treating, but that desire for normalcy, for lack of a better word, drove me to push him.

I'll admit that I'm human in that respect.  I do love my boy, but the holidays are less enjoyable as a parent with a child who hates them so and wants nothing to do with the revelry that other children so readily enjoy.  It's hard not to watch with envy at children much younger than Jack who come to the front door, donning a costume and eager to tell you what they are for Halloween.  It's hard not to envy the glow on these children's faces as you produce a piece of candy when your child can't eat that same candy.  It's hard to not wish for a holiday that resembles the Norman Rockwell image that we all bear in our minds.

Honestly, I feel bad for thinking this way.  I know that I should be strong and say that I accept my boy for who and how he is - and I do - but as a parent, I still selfishly want that same holiday experience that the NT parents get.  I think it's what most of us imagined when we first entered parenthood.  I don't think there's anything wrong with longing for a piece of that, but I still feel guilty, like I let my boy down for trying to make him conform to my idea of Halloween when his was simply ignoring the holiday and playing on his iPad.

That's not to say that we didn't get anything out of the experience.  We learned a couple of valuable lessons and had a couple of victories.

First, for the lessons.  We learned that when someone opens their front door, Jack goes right in.  Obviously, this isn't appropriate or safe for him to do when Trick-or-Treating, so that will be a concept that we'll have to work on before next Halloween.  Also, Jack launched into a few inappropriate scripts during our outing.  When we went to leave the first house we visited, he said what his dad says to him every morning before he leaves for work - "Let me give you one last kiss."  It's a script that Jack's been parroting a lot lately, but obviously it's not appropriate for him to say that when he leaves a house after Trick-or-Treating.  There's no intent behind it - so he wasn't leaning in for a kiss or anything - it's just echolalia.  Luckily, too, Jack's articulation plummets so much when he's scripting that the neighbors couldn't understand what he was saying.  It gives us some things to work on.

Second, the victories.  Granted, we had to force it on him, but Jack did wear his costume very, very briefly.  Also, this time last year, he was practically non-verbal!  We were able to take advantage of his immediate echolalia by prompting him to say "Trick-or-Treat!" to a couple of people, which was a noticeable difference from his silence last year.  Honestly, neighbors don't know a damned thing about echolalia, so they don't get that none of it is spontaneous and none of it has meaning.  What they don't know doesn't hurt!

We're trudging forward with the 2012 holiday season.  I hope that you and yours had a very Happy Halloween, full of more successes than failures.