Monthly Archives: December 2011

Encouraging Pragmatics.

Standard

One of the reasons many people scrunch their eyebrows in a sort of disbelief when I mention that my son was diagnosed with Autism Spectrum Disorder is the fact that my son talks.  Period.  He is two, and his expressive/receptive language currently meet age appropriate abilities.  This was not the case with expressive language a few months ago, but we have had an explosion because of his hard work, our hard work, and his early intervention therapies.  And when I say explosion, I mean Like. hundreds. and. hundreds. of. words. And the ability to use sentences!

So why does my son meet the communication requirements to satisfy an ASD diagnosis?

Because he doesn’t talk much, if at all, to anyone other than himself unless he is directly asked a question on his terms.  (Or if he wants the floor cleaned.  Seriously!)

Right.  So… he will go to the window and say, “See big red firetruck driving.  Go fast!”  But he will not come to me and say, “Need drink Mommy,” or “See trucks, Mommy,” or anything of the like that involves asking for needed/wanted items or sharing things of interest.

I’m grateful for this problem because I was really sick of how quiet our home was if I didn’t talk all of the time.  I mean, really, my throat was sore by the time Friday came along, and I was starting to feel like a crazy person.  However, the communication barrier is not gone– it’s just different.

To be honest, this barrier is a little scarier than the old one because the lack of social communication is sort of the hallmark of ASD, and with my son’s impaired eye contact and other forms of expressive communication, we know this issue is not going to resolve with a language boom.

So what now?

Well, interestingly enough, as much as I have been asking questions out the wazoo it seems that it’s time to let them take a chill pill and encourage pragmatics to develop in a more natural way so that our son understands the flow of language and conversation.   As in letting my son fill in the blanks and pausing between phrases without questions to encourage input.  I have already done some of this on my own, especially when we go on walks, but also when singing songs and talking about familiar items or activities.

And so the plan for encouraging pragmatics right now is observing things together.  It’s time to model sharing interest and pointing out objects.

Me: Let’s look out the window.  (pointing) I see a bird.  You see a…

(wait for it, wait for it, ….!)

*******: Car!

Me: Yes, I see the car, too!  What a small, blue car on the road.  Tell me what else you see.

*******: Sky.

…etc…

 

It’s more, though… it’s not just straying for the Q & A way of conversing in general; our speech consult at his Children’s Hospital encouraged us to set up “asking” him about his needs in a more pragmatic way.  As in…

Me: I wonder what you want to eat.

*******: hummus!

 

And while he eats his hummus and I scramble around the kitchen grabbing things for his little sister, he will narrate… sort of like this:

“******* eats hummus.  Yes, yummy.  Yes, eating dinner.  And mommy eating hummus soon, too.  And the lights are on.  Sister here too.”

And sometimes what he says to himself is something I have just said.  Sometimes he says it over and over and over (echolalia), but if he does this, it is normally done in an appropriate way that we know he understands what he is saying.

So obviously, his capacity for language far exceeds how he uses it when speaking to others.  But it’s a start.  And it’s something I will update on occassionally… especially in the hopes that our strategies for pragmatics help others, too.

Talk on!

 

Advertisements

On Believing.

Standard

My Mom-Mom, among the many lovely gifts she gave our family this Christmas, snuggled a little snowman ornament into my packages.  One very plain message is written on it:

“Believe.”

Now, of course, this ornament surely is referring to believing in that one magical man so many little children anticipated visiting this season.  For adults, it probably resonates beyond Santa to the birth and baby many celebrated, too.

I know my Mom-Mom wasn’t trying to spread the type of cheer one would expect with that ornament.  She was sharing a piece of herself… to remind me to believe that our family life, my son’s life, my life can be everything we ever thought it could be, autism or not.

When I laid eyes on the ornament, my first reaction- despite my gratitude- was simply that I didn’t need this ornament.  I already believe.

And then yesterday, sitting with my own mother, the topic of eye contact and my son came up during our conversation.  “He’s looking a lot, Erin,” my Mom said.  “Even at his aunts, even at his Great Aunt today.”

I knew this.  I saw this.  But I didn’t believe it.

Because it hurts to believe in eye contact.  And I need you to know I am a girl with high expectations– I am a former New York City Teaching Fellow who traipsed off to the Bronx to teach special education because I was a BELIEVER in high expectations; if you expect great things, they can and will happen.

Except… expecting eye contact hurts me in a way nothing else does… because when you cannot get eye contact from your child, your sweet baby, it breaks your heart.  And with autism, eye contact comes in waves… a few weeks go by where my little boy occasionally stares deeply into my eyes, and then one morning, it’s gone for months.

The winds just change, and there’s nothing to do but attempt to engage, to connect, to get a look. I receive more eye contact than anyone else at this point, but even still, when it fades to fleeting or days of nothing, I feel such ache.  After all, my son is only two years old, and autism is newer to us than just being parents.

And so I have not been believing in eye contact.  Because it’s easier not to expect it than to, in some sense, mourn it every time I lose it.

I realize now I am doing him an injustice– I am doing myself an injustice.  For in not believing, I am keeping myself from giving all I have and expecting all he has.  I need to believe.   We all have our weaknesses, and I suppose this is mine right now.

So thank you, Mom-Mom.  Thank you, Mom.  You have challenged me to take a leap of absurdity… to believe.

Happy Holidays.

What I Wish I Had Five Months Ago.

Standard

It’s time I laid out some information here… not because it isn’t easily found on the web otherwise, but because sometimes it is easy to see and read it all in one place.  Thusly (I love that word, and I can’t help it), I am going to use this post to answer, as completely as I can, the question, “What is autism?”  I’m not one to dumb things down so this might be boring and dry, but this is going to be a one stop shop of info, kind of with me-five-months-ago in mind.  I hope this helps a Mommy out there needing this information.  I hope this makes sense, and I hope it does the information justice.

Let’s start with a portion of a summary I found on Psychology Today’s website:

Autism is a complex developmental disorder that affects the brain’s normal development of social and communication skills. Common features of autism include impaired social interactions, impaired verbal and nonverbal communication, problems processing information from the senses, and restricted and repetitive patterns of behavior…

Children with autism do not follow the typical patterns of child development. In some, signs of future problems may be apparent from birth. Other children develop typically at first, but between the ages of 18 and 36 months, their development stagnates. Parents may notice that they begin to reject social contact, act strangely, and even lose language and social skills that they have already acquired. In other cases, there is a plateau or leveling of progress, and the difference between the child with autism and other children the same age becomes more noticeable.

Here’s a link to a “What is autism?” by Autism Speaks.

So that’s some basic info.  And what does it mean?  It means that autism, and when I say that I am really referring to a set of disorders that fall under the DSM IV (the standard book of diagnostic criteria for psychological and neurological disorders) current category of “pervasive development disorder” including Autism, Pervasive Development Disorder not-otherwise-specified (PDD-NOS), Asperger Syndrome, Rett Syndrome and Childhood Disintegrative Disorder.

Now, psychologists are working on the DSM V, and there are revisions proposed to the current criteria that will put all of these subsets under one label– Autism Spectrum Disorder.  My son was labeled the “new” diagnosis of ASD, though he fits into the current subset of PDD-NOS.

Autism/ Autistic Disorder is what is commonly known as “Classic” or Kanner’s Autism– it is what most people think of when they have a stereotypical picture of autism in their head, but that does not mean that autistic disorder is always the most severe form of autism. From what I understand, reliable diagnosis can be made as young as twelve months and usually by two years of age.

PDD-NOS is what most people consider the “catch all” label for people who don’t fit into the other categories of autism.  PDD-NOS captures people who meet all the criteria for autistic disorder but are not severe enough OR who meet all the criteria but have great strengths (technically I think my son fits in here) OR they do not meet enough criteria to fit the classic description/have an arrangement of symptoms that keeps them from meeting the autistic criteria even though the person could very well be more severe than someone who meets all the criteria for autism.  It’s sort of confusing, but once you look at the diagnosis criteria, it starts to make sense.  Let me make this clear though– PDD-NOS is a form of autism not nearly the same for any person.  From what I understand, reliable diagnosis as young as twelve months and usually by two years of age.  ((I think I like the DSM V label of ASD more than PDD-NOS mainly because it reflects the great variance in arrangements and severity in its name, whereas PDD-NOS is ambiguous and assumed less severe (it’s a toss of a coin as to whether that is so). Besides, autism is said to be a spectrum disorder, but it doesn’t yet have the word spectrum in its name.  I think it is just more clear to put it there.  And this is just my very humble and from-where-we-are current opinion so don’t take me too seriously.))

Asperger Syndrome is often considered a less severe form of autism that generally gets diagnosed past the age of five.  Known almost as “geek” syndrome because people with AS are generally very high functioning and often very intelligent, it has less diagnosis criteria than the two former labels, most notably different in that AS people do not have speech delays (depending on our son’s progression, our son could arguably wind up with this as a better description).  I’ll write more about AS later for sure, but there’s some good info on it here and here and here.  I will specifically link to the Asperger DSM IV criteria here.  I will also mention again that Asperger Syndrome can be sneaky in girls.  Read here and here for more information.

I’m not getting into Rett’s or CDD right now, but visit the links for more info.

 

So now let’s look at the DSM IV criteria.  Notice how it gets sort of complicated with the certain number of symptoms in certain categories and then a certain number ‘at least’ total… this is how PDD-NOS is created– there are kids that have six total symptoms, but mostly in one category or less than six symptoms, but the symptoms affecting the child are very severe and in more than one category.  So just imagine how a child who has a very social nature can then be terribly disrupted by being severely affected by the repetitive behavior category.  Arguably that severity there will affect the other categories, but still, there are children and people who are so marked by one of these categories that they can be more severely affected than someone who meets criteria in the right alignment– like our son, who meets everything where he needs to and yet is still arguably high functioning.

Anyway, I will bold/italicize things our son meets and * things that are not terribly severe based on our child’s current age (if nothing changes there, it becomes more severe… as in, if he does not grow out of it like most toddlers do) or it simply does not seem to be a severe symptom at this time. Please remember our son is not labeled Autistic Disorder because of his strengths AND lack of severity in some areas:

Autistic Disorder A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):

(1)  qualitative impairment in social interaction, as manifested by at least two of the following:

(a)  marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

(b)  failure to develop peer relationships appropriate to developmental level

(c)  a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)

(d) lack of social or emotional reciprocity*

 

(2)  qualitative impairments in communication as manifested by at least one of the following:

(a)  delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)

(b)  in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

(c)  stereotyped and repetitive use of language or idiosyncratic language

(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

 

(3)  restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

(a)  encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

(b)  apparently inflexible adherence to specific, nonfunctional routines or rituals

(c)  stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole body movements)*

(d) persistent preoccupation with parts of objects*

 

B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

C. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.

Now for the DSM V.  I’ll simply mark where our son displays definitive symptoms.  Please notice specifically the added sensory component.  Much,  much needed.:

Autism Spectrum Disorder

Must meet criteria A, B, C, and D:

A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1.     Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

3.     Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people

 

B.    Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of  the following:

1.     Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases). 

2.     Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).

3.     Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

4.     Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

 

C.    Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

 

D.         Symptoms together limit and impair everyday functioning.

 

Okay, great.  So what the hell does any of this mean, right?  *Sigh* Here we go… These “categories” of impairments are basically summarizing that a person has deficits in the categories of social, communication, and repetitive behaviors.  These deficits must be severe enough to “limit and impair everyday functioning.” And the onset of these symptoms is generally between birth to age three, though Asperger Syndrome is not diagnosed so young– it sort of becomes apparrent in time that AS is there, and with the DSM V, it changes the age range issue.   For our son, there was always an issue with eye contact and then with speech development, but then he lost skills– which is not uncommon.  The “term” there is regressive autism, but our son has not lost enough and has regained plus more in so many areas that that term is not the best fitting for him.  Not that terms always matter. Ach! I am rambling!!

So here’s the breakdown of non-sciencey info.

In the category of social: that even if a person CAN and HAS made eye contact… even if your baby DID make the milestone of i.e. social smiling… if there is an IMPAIRMENT in functioning that sets this person apart, the criteria is met.  This impairment can include eye contact or even not bringing objects to people to show or share them (my son does not bring me things and look at me to show them to me.  he only brings me three things 1-“dirt” he wants me to throw out, 2-books via shoving them in my hand and not looking at me, 3-cars, which he does not always tell me what to do. sometimes he says “be red car.” other times, he puts the car in my hand and whines while moving my hand to get me to play. obviously, we are working on this with strategies we can talk about later.)  It can include a lack of looking up at someone during play (“joint attention”).  The person doesn’t have to be antisocial.  The person does not have to hate being touched or hugged.  However, those can be symptoms.

As for communication, the most obvious is a speech delay in a child that persists and persists.  Some children on the spectrum DO make eye contact, but they are nonverbal or limited in verbal functioning.  Some people HAVE language, but developed it peculiarly.  As for our son, he has language, but he never really babbled or held a cooing conversation.  He currently does not really ask for things, though he is sort of starting to make some demands (especially for me to use the vacuum as you read yesterday).  The limit in language can be merely pragmatic speech, that is keeping up or initiating a conversation– maybe the person even WANTS a conversation, but can’t understand or ‘do’ social chit chat.

Many people on the spectrum have difficulty with imaginative play.  This is one of our son’s great strengths, and so I want to stress here that just because a child is imaginative does not suspend his or her ability to be on the spectrum.  In fact, some people on the spectrum have vivid and incredibly overzealous imaginations, so much so that some are famous artists, writers, composers, you-name-it.  Again, there is a huge variety in functioning, and some people do not even realize until adulthood that he or she is on the spectrum.

Lastly, repetitive behaviors.  Again, what a range!  Because this can encompass the sort of obsessions my son has in trucks and vacuums, but it can also account for his head shaking and sitting and opening a cabinet door over and over again or lying on the ground to watch a car’s wheels roll and roll and roll (to my son, ceiling fans are awesome!).  It can account for people who have very strict routines that MUST be met, and this can be in any area of life from food (there are kids who will literally eat only out of one specific bowl, or just one specific food) to flipping out because a parent drove on a different road home than normal.

The sensory component is a proposed new one, but it accounts for sensory processing problems that can refer to balance/coordination, difficulty with lights/sounds/tastes/textures/clothes/temperatures, lack of pain/hypersensitive to pain, etc. etc. etc.  I’ll go here on a post later because there is much to say!

There are things that ASD people can be very, very good at doing… things like puzzles, music, art, math, logic, computer technology.  Some ASD people are hyperlexic and read at a very young age.  Most people with ASD, like all people in this world, are amazing and wonderful.  Don’t let this disorder get in the way of how you see people with ASD.

If you are concerned about someone you love, please read more about the RED FLAGS for autism here and here and here.

What else is there to know?

Sometimes autism is not just there in and of itself.  There are often co-morbid issues or sometimes genetic causes.  The genetic causes can be Fragile X or Angelman Syndrome or Rett Syndrome.  Speak to your doctor if you think your child should have genetic testing.

The co-morbids are many, but ones we are specifcally dealing with are possible seizure disorder and some severe gastrointestinal issues.  Many people have sleep issues.   Our son NEVER has been a good napper, and I mean literally he was a three-month-old who almost did not nap.  It never really changed.  Movement coordination is often an issue, and often dyspraxia/apraxia of speech is diagnosed.   And then there is sensory processing disorder, which is sort of being account for in the new DSM within the autism diagnosis, but also is possibly being added as a separate official diagnosis option.  Honestly, sometimes I wonder if SPD is really the only thing “going on” with our little boy.  Other co-mordids are things such as ADHD, mental retardation, mental illnesses such as bipolar disorder, anxiety disorder, major depression.  And more!  Wee!

GREAT RESOURCES

Autism Speaks

Autism Society of America

Autism NJ

A blog that helped me, even if old:

A Little Bit Autistic

And if you think your child looks like autism, but want to see what is out there, Autism Speaks has a video glossary Also, I honestly did search on youtube for some things.  Obviously remember some people are wacko and put weird things other there, but if you are searching for something specific or a specific behavior and you are somewhat discriminatory and thoughtful, it can be a great resource.

P.S.

Wonder if you’re on the spectrum? You can see how you measure up as an adult with Psychologist Simon Baron -Cohen’s Autism Spectrum Quotient test.  If you are puzzled by your score, take the Empathy Quotient and/or the Systemizing Quotient or the Mind in the Eyes  or take this “Aspie quiz.”  Or call a therapist?

 

P.P.S.

Want to know the why of autism?  I’ll write about causation later.  It’s just too vague and sort of heavy for me right now.  Please read from respectable resources, and use your brain.

 

Getting Unstuck

Standard

It’s sort of ironic that my son has learned the meaning of the word “stuck” over the past month or so.  And he thoroughly enjoys letting us know when things are “stuck.”  Soft soccerball thrown up the stairs?  “Soccah-bawl stuck!”  Bucket of blocks not moving the way he wants? “Dis one is stuck!”  Stuck. Stuck. Stuck.

My son is stuck.  On vacuums.  On blenders.  On mixers.  On trucks.  And it’s not just a small obsession; it’s sometimes all-consuming, and I cannot get him to move on.

For instance:

Me: ****, what do you want to do?

****: Mommy use.

Me: Mommy use what?

****: Mommy use vacuum.

Me: We did that last night honey.  The floor is nice and clean.

****: Nice and clean. Mommy use. Mommy use. Mommy use vacuum.

Me: Let’s play dinosaurs!  Rawrrrrrr (Dinosaur Train character starts waddling across the floor)

****: Ooey gooey; ooey gooey floor. Vacuum.

Me:  Later. ****, look your sister is smiling at you!

****: Vacuum later. Later vacuum. Mommy use!

Etc. etc. etc.

 

Well, stuck you, autism.

 

And it’s similar with the kitchen appliances.  These are all things he was once deathly afraid of to the point that he sometimes hid under covers and worse.  Luckily, OT has made a huge difference in getting our son more ready to experience unwanted sensory experiences, and his other therapies have helped in using his speech to answer questions.  His receptive language has always been decent, but it seems that he can really gather what I am saying to him more than ever- even if it takes more time to get his undivided attention.  And all of those things have made it much easier to prepare my son to experience life, allowing our family to do daily living tasks without absolutely terrifying him.

The problem has morphed, though.  For what was once fear is now obsession.  And I am trying to break it up.  The best luck I have had so far is with the mixer– we made snickerdoodles last weekend with our stand mixer (it’s not as loud as the hand mixer, blender, etc.), but the snickerdoodle dough got thick, and the mixer started thumping a little on the counter.  Well, there goes the fun of that mixer.  Now all I hear when my son goes near the kitchen is “Mixer all done.  Snickerdoodle done. Mixer all done…”

So today I thought it might actually help to make cookies again.  Only we used a wooden spoon and some elbow grease (always working on improving low tone here, people!).  I wanted to explain that cooking and baking are not scary and that mixers are just tools to make our work easier.  He was very attentive, and I know he understood me.  The rest of the day I only heard two mentions of the mixer instead of who-knows-how-many times.  So that’s an improvement.

I guess my point here is that it’s hard to get your child unstuck on things regardless of being autistic.  But I think it’s a little harder with this disorder.  And because of that, it’s frustrating– it’s hard to watch your child be so obsessed with trucks that when he receives one at his birthday party he cannot part from that truck for the next 2 weeks other than bath/bedtime.  And I think  many people don’t understand that these obsessions are not hobbies– they’re so much more all-consuming and life-dominating.  They hint of OCD (and maybe my son will one day be considered for that diagnosis, but I’m not in any rush for that.), and it’s not healthy little-kid love.  There’s a reason his Christmas list says, “NO TRUCKS.”

And it’s hard, too.  Because these obsessions lead to ways in connecting and engaging.  Play with trucks?  Get answers.  Cook together?  Get eye contact.   It’s a topsy turvy world.

But it is Christmastime, too.  And my sweet boy asked Santa (from a very far distance looking at the floor while drinking milk) for a School Bus & apron.  I have a feeling St. Nick is not going to disappoint, especially during the first year of really believing in Santa.

So that’s life here right now.  We’re getting unstuck while perpetuating it.  What a cycle.

Little Moments.

Standard

I find it hard to start writing blog posts right now because there really is so much to say about so many things.  Days of silence on here are merely reflective of me feeling like not one thing is just the right thing to say at the moment.  And, well hey, I have two little kids.  Life is crazy.

Luckily, I have something I would love to share now that I have some time.

Sometimes, it is in the simplest moments with my little ones that I feel such gratitude.  It might be something other parents would consider par for the course of a day, but little moments can mean so much to me.  I am learning lately not that I am changing my expectations– I am a huge believer in having high expectations (if you don’t live like you expect more, the more doesn’t come)– but I am changing my attitude.  I am grateful in a way that I have not been before now.  Honestly, it just makes life special.

My son had a good day on Friday.  One of those days that make me feel like autism is something stupid and small that we can beat in no time.  These days don’t come so often, and when they do, life seems sort of magical.  It’s cheesy, but it’s true.

On this particular good day, I decided it was just the right day to put the Christmas tree on during the day.  My son was delighted.  We put on some Christmas music, and soon the Nutcracker Suite was lightly floating through the air.  I looked at my kids, my daughter chewing insistently on her toy monkey (she’s on her way to four front teeth for Christmas) and my son, looking up at me bright-eyed.  His eyes are such a beautiful blue; striving to create moments for eye contact are just so worth it.

Anyway, I just started moving… slowly… saying softly to my kids, “Isn’t this beautiful?  It makes me want to dance… can you dance like Mommy?  Smoothly like this?”  I gracefully raised my arms and swayed.

I did not predict any response.  I did not predict any movements. But when I looked back down at my son, he was smiling up at me.

“Yes,” he said.  “Yes, dance.”  And he extended his arms out slowly, gracefully… as gracefully I have ever seen him move.

I cried.

I cried because this is a boy who refuses to the itsy bitsy spider because he cannot do the finger movements anymore.  This is a boy who is starting to rebel at the thought of using crayons.  This is a boy who trips over his own feet walking across the living room.  This is a boy with neurology appointments and occupational therapy and a lot of complicated, confusing issues.

But at this moment, this boy was dancing.  For the first time.

My son danced on Friday.  Anything is possible.

The Power of Google.

Standard

To start, let me just say that my husband has lovingly referred to me as “The Googler” as if I am some sort of villain from Batman (And let me assure you, I am Batman’s biggest fan so there’s no way I would be a villain in that comic) because I have a great ability to find online information very quickly.  Maybe because I took a course in electronic information gathering as a journalism student.  Maybe not.

Either way, I don’t know that “our” generation has fully realized how powerful the internet really is.  Or at least not everyone gets it, and I am sure I don’t truly get the full implications of the web, either.

What I do know is that Google has been a game changer for our family.  Things I would not have found so fast or possibly ever:

1. My original search about my little dude online was due to his puzzle skills and alphabet obsession.  What I found was a bunch of stuff about autism and hyperlexia.  At first, I was like, “No, no, I want to read about giftedness, computer!  What is this weirdness you are spouting at me?”

But then I read the stuff and took a step back with a logical eye.  I became almost certain my son was “hyperlexic. ” It’s not really a label someone gets diagnosed with– hyperlexia is sort of this umbrella term for little, little kids who learn and become obsessed with letters and sometimes numbers.  Super early readers are sometimes looped in here, but not really if they are preschoolers or socially-adjusted.  Hyperlexia is a term, as I understand it, used to describe someone with a sort of fanatic love for these things with a lot of autistic– social communication deficits and sensory issues (we’ll get to sensory things and how they apply to autism in time)– tendencies.

My point here… Would I have realized my son was on the spectrum without the internet? Yes.  Would I have put the pieces together as quickly? Most likely not.

2. Okay so I got on my, “I think my son has…” horse and started galloping.  I heard a few, “I don’t know because…”  “Wait and see…”  “Maybe…” responses.  Nobody was like, “YES!”  And my dude’s pediatrician was on vacation (I love this pediatrician, and we continue to keep our son in his practice despite our now one-hour commute there).  I had to schedule an appointment three weeks in advance.  So I started googling again… I found Autism NJ, and they have some great information on their site.

And golly gee, what did I see?  New Jersey Early Intervention needs no referral, not one doctor’s note… just a call from a concerned parent and your child gets evaluated!  I called, had his intake call done, and his evaluation scheduled one week before his pediatrician appointment.  Perfection.

Again, would I have known this so soon without the internet?  Maybe if I had talked about our situation to the right people.  Would my son’s evaluation have been scheduled so quickly?  Absolutely not.

3. EIS Eval happens.  Autism is not diagnosed because that’s not part of it– deficiencies are recognized (If a child has a 33% delay in one area or two 25% delays, the child is eligible for services).  My son met the criteria.  I was told we should get autism “ruled out” … so the search for the right doctor to do THAT began even before we saw our pediatrician.

Let me tell you, developmental pediatricians are hard to schedule on short notice!  And what’s more, the best of the best have at least seven month waits.  I got around all this with a much shorter, but still not short wait… because of online research.

Now, most people would not have been able to maneuver what I did to get my son into his autism evaluation appointment because it had a lot to do with our daughter, but still, I would not have found any of the information leading me to get him in if it weren’t for — a NEWSPAPER article (what?  the printed word is alive?) and Google and an online database.

4. This leads me to our daughter.  Let me say firstly, my husband and I are not hyper-crazy-investigate-health-problem-zealots by any means.  We’re pretty chill, earthy people.  But there is research, very reputable research at that, suggesting that siblings of children with Autism Spectrum Disorder have a much increased chance of having an ASD in comparison to other children.  Beyond this, while boys are often a bit more obviously on the spectrum, girls are sneaky because they are scientifically and generally more verbal, social creatures, even from the baby years.

I found a study tracking infant siblings of children with ASD, and we enrolled our daughter in it.  It will keep a watch on our little (am I allowed to call a possibly 20-pound who-knows-how-long six-month-old little?) girl, and we’re pretty happy about it.  We’ll get into this more another time, but not anytime soon.

Again, would NOT have found this without the internet.

5. We are now looking into more therapy options for our son.  We’re not searching for medical options right now– we have medical concerns about our son that might relate to autism and might not, but they are for doctors to discuss with us for now– we’re looking for therapies.  And wow, is there a lot to read!  We would know some things because of early intervention, especially our son’s amazing occupational therapist, but there is no way I would have found some of our possible therapy ideas and plans without it.

6. Blogs.  Oh how I love blogs by Moms.  I have always loved blogs by Moms.  I wrote one about being eco-friendly.  And wouldn’t you know there are plenty out there by Moms of autistic children, too?  What gold for others trying to understand if, what, how about their own children.  Right now, I think there’s nothing more informative than hearing about the every day of a child and the struggles of those parents.  Mom-written blogs are comforting, educational, and fascinating.  Not possible without the internet.

7. As we are looking for therapy options for our son, we are realizing that no matter how great our insurance is, money ain’t a thing.  And we can’t afford everything.  But there are grants for kids on the spectrum.  And wouldn’t you know you can find them online?  Fabulous.

So Behold… the Power of Google.

**Google is great, but refer to health professionals for medical needs, please.  This post isn’t to say that you can diagnose your child yourself.  Doctors are important and essential.  Good research and a prepared parent makes for better advocacy and questions– it makes your child all the better served.**

Awe…tism.

Standard

I think it’s important to share that while my son has deficits in some major areas, mainly social communication and sensory issues, he also has some major strengths.  Strengths that are awesome and inspiring… strengths that coexist with his shortcomings and make him one of the most perplexing and interesting people I have ever known (and he is only two).

Let’s take a trip in my son’s history and see what you might have seen…

A six-month-old who figured out how to use different pieces of his exersaucer to press buttons and play music when he could not reach the buttons.

A thirteen-month-old who put together puzzles that 5-year-olds might not be able to complete.

An eighteen-month-old who preferred listening to Sonny Rollins over Raffi.

A twenty-one-month-old who knows not only the alphabet, but also lower case and upper case letters… and the sounds that associate with those letters (but not all the time).

A twenty-five-month-old whose special interest in trucks has allowed him to recognize and label dozens of intricate construction equipment with their correct names. 

Currently, he can also count to thirteen correctly without any assistance (and will help an adult count to 100).  He knows his colors and shapes, big from small, and a toad from a frog.  He likes hearing me explain migration, and he loves to cook with me, especially banana bread– he even can tell me which ingredients (not all of them) we need and what we need to do with them to make it, as long as I ask.

What is important about these strengths… these awe-inspiring strengths… is that they are actually what truly pushed me to look at autism in the first place.  It wasn’t his limited eye contact or his lack of babbling.  Because honestly, when you meet my little man, you might not see autism.  In fact, nobody really saw it but me.  Especially at first.

But I was a curious Mom.  A Mom who taught special education who knew that my son’s puzzle skills were absurdly too good.  Either gifted or … something else.  I looked up his puzzle skills and his letter-love.  “Hyperlexia,” said Google (more on this later).  And there we began our journey into investigating autism and how it pertained to my little man’s profile.  Early intervention was called.  And they’re here to stay until he’s three.

So my son’s uniqueness stuck out to me at first because of what some will call “splinter skills” (however, at this time, I think my son is a smart cookie with autism rather than an autistic kid with splinter skills).  That’s neither here nor there, though.  Because the strengths that matter right now are the ones I’m going to end with.

My son also has an amazing sense of humor and a beautiful, appropriate smile.  He engages in fabulous imaginative play with adults and gives the best snuggly hugs you could ever want from your child.  He rhymes and giggles about those rhymes.  He kisses his sister good night.  He is learning his manners, saying things like “please,” “thank you,” “I’m sorry.”  He expresses love and joy.

My son is not even close to the pictures painted of “autism”… where a child sits rocking in the corner scratching his face and screaming.  No, that is not my son.  Is that autism?  It can be.  But many, many people with autism are not that stereotypical picture.  There is a lot going on when it comes to autism, but for now, let me say that all people with autism are first and foremost people with personalities and quirks.  Yes, those quirks often make socializing and communicating difficult, but that doesn’t mean they are some stereotypical definition.  People with autism are much more varied than you would expect.  And maybe that is why many people would not realize my son has autism.  But he does.  And I love him.

He’s awesome.