Tuesday, January 31, 2012

The Chevy or The Lexus?

What the school system is legally supposed to
provide your child...the Chevy.
(Image Source: Chevrolet)
I was anticipating an informal meeting this Friday with the person who would be Jack's preschool special education teacher and his current special instructor.  Jack's SI is going to be going abroad for the entire month of March and part of April (yikes!), so it was important to me that she get the opportunity to pass along any insight she has into Jack to his future teacher, as that transition will occur in her absence.

What was going to be informal has suddenly gotten much more formal.  We will also be meeting with the school's IST and speech therapist.

And I feel like throwing up...a little.  Let's face it, it seems like everything is a fight for special needs parents.  You fight EI for more services.  You fight your insurer to cover the services that EI won't cover due to "budget cuts".  You then fight the school system to provide the services that will help your child succeed.

Unfortunately, as I've heard many parents say, the school system doesn't have to provide the Lexus.  They only have to provide a Chevy.  That's what you get with "Free and Appropriate Education".  No one ever said it was "Free and Best Education".

What I actually want for Jack...the Lexus.  The ski
chalet would be appreciated, too.
(Image Source: Lexus)
Being a mom, I don't want the Chevy for my kid.  It's cheaper, less sporty, and requires a heck of a lot more maintenance.  I want the friggin' Lexus!

Knowing now what I do, I'm going into this intake process trying to be more prepared than I was going into our BCW evaluations/intake.  I'm also baking cookies, as another special needs parent once said she does for all school meetings.

I wish that these transitions were easier.  That makes me sound like Jack, doesn't it?

I'll admit that I'm nervous.  Jack does well with his program, but I feel like he's got so much potential and could do even more if we were to bump up his program with the addition of preschool plus school therapies.  I'd love to see him be in a mainstream classroom one day and my hope is that the intensive work done in these early years might help him achieve that goal one day.  No, it's not my goal in the near future, but I am optimistic that at some point past Kindergarten we can aim for it.

It's difficult going into these meetings knowing that so much of your child's future success rests on the intervention provided NOW.  It feels like the time I went to fight for additional SI from BCW.  I won, but it didn't make me feel any less nauseated.

I'm getting my act together in the best way I know how, by over-preparing for this meeting.  I'm bringing my big ol' files of evaluations, notes, and everything else I can throw their way.  If nothing else, I want to show that I'm not messing around.

I have a doctor's appointment tomorrow, and we have a double-therapy day on Thursday.  Hopefully, I won't continue to feel so nervous, but I know I won't be able to rest until Jack's placement is done and I can sit back and watch the progress (hopefully) happen.

Monday, January 30, 2012

10 Things You Should Never Say to a Special Needs Mom Part Deux (The Final Insult)

If you say any of these things to a special needs
parent, Jackie Chan might just come and kick
you in the face.
(Image Source: Wikipedia)
Several months back, I did a post on the things you should never say to a special needs parent.  Well, being nearly a year (holy crap) into Jack's diagnosis, I've gotten a little older, a little wiser, and I've heard a bit more crap talk about my kid.  So, I'd like to amend my previous list and add these new items to it:

11.  The "R" Word.  I've talked about this before, but just don't do it.  Nothing, and I mean nothing will make me take on the appearance of a deranged banshee faster than calling my kid this.  Seriously.  This is not the term that is used these days and the only way in which it is used is in a derogatory manner.  If I hear you say it, you'll likely get a verbal punch in the head from me.

12.  "Is he on any medication?"  Seriously?  WTF?!?  I actually had someone ask me that this weekend.  No, I don't medicate my kid, nor have any of his doctors recommended medication at this time.  If they do, we'll carefully consider it, but in the meantime...it's none of your damn business!

13.  "Has he not been around many other children, because my class/program/play group will teach your child how to share and play."  I get this exclusively from people who don't know that Jack's autistic.  They'll see how he is around other children and suggest that perhaps I haven't exposed him enough to other children (not just typical ones, any children) and that he might need a lesson in sharing and caring.  After all, I obviously haven't tried to teach him social skills.  My son has been in Gymboree or some play group setting continuously since he was 6 months old.  If that was the answer to his problems, he wouldn't be autistic, because he's been doing this for over 2 1/2 years.  However, it hasn't helped his social skills, so thank you for the advice and for making me feel like I haven't done enough for my kid.

14.  "Your child doesn't need therapy.  This snake oil/eye of newt/modified acrobatics program is all he needs to cure him."  Beware the person who tells you that you should abandon all therapies in exchange for their program that a) is not covered by insurance, and b) has not been scientifically tested and peer reviewed.  There are lots of people out there who will try to sell special needs parents anything, because they know we're desperate for solutions, but if it sounds crazy, it probably is.

15.  "That is the funniest thing I've ever seen."  When my kid is wigging out, laughing at him, as tempting as it may be to you, makes me feel like poo.  My kid can't help it or control it when he has a meltdown, and hearing you laugh makes me want to both cry and metaphorically punch you in the head.

16.  "Why can't he have a cookie?  Just one won't hurt him!"  It's not that a cookie will hurt him, but when we're out and about, people try to push food on my kid like he were a starving child.  However, giving him a piece of food, like a cookie, that he doesn't eat will only serve to cause him to meltdown.  What I wish is when I say "No, thank you" to your offers of treats, you would say okay and drop it.  I really don't want to have to go into the specifics of my son's sensory issues, oral-motor weakness, and feeding problems.  It's exhausting to have to explain it over and over again and, quite honestly, it's no one's business.

17.  "What do you think caused it?  Do you think it was too much TV/vaccines/some other theory of the day?"  People tend to want to talk to us about what caused our child's autism/disability.  Many people have different theories, but I can tell you that what caused Jack's autism means very little to me.  What I can do about it is the bigger question.  I think everyone wants someone to blame.  I can say that, in all honesty, I believe Jack was born autistic.  He regressed at one point, but I don't feel as though he was a normal child who suddenly stopped speaking.  He was a child with developmental problems who additionally regressed in his speech at about 18 months.  There might be some environmental factor at play, but I believe that genetics had a big part of it.  I also don't appreciate the people who seem to imply that there might be something I did or didn't do, like vaccination, that caused Jack to be autistic.  No parent wants their child to have special needs, but I can't spend my energy looking to the past.  I have to move forward.

18.  "Look, he can spell.  He's a genius!"  You have no idea how many people, none of whom have special needs children, try to tell me that because Jack spells words with his magnetic letters he'll be just fine.  Well, I'd say the problem lies in functionality and comprehension.  One, when Jack spells with his letters, which he'll do for hours at a time, it's not a functional activity.  He's not engaging another person and it doesn't have a purpose.  It's a stim.  Second, he doesn't comprehend what he's spelling.  He spells things like "invent", "adopt", and "imagine".  He sees them on Super Why! and spells from memory - and he has an excellent memory.  While I'd like to think he's a genius, I hate to see something he does turn into a side-show act, which it seems like the spelling does sometimes.

19.  "The only way you can be sure you won't have another child with a disability is to not have any more kids."  Okay, this statement has never been said to me by a physician of ours, but I have had several people volunteer this to me in passing.  First, I should say that I find it wildly inappropriate when people ask you about when you will have children or if you'll have more children, special needs family or not.  It's an intensely personal decision and there are often factors that go into it that you don't want to share with the world.  I'll volunteer to other special needs parents who have wanted to hear opinions on it, but usually that's it.  People often want to know if we'd consider having more kids, and they often have heated ideas about it.  This is one of the responses I get.  I understand that it's true, but do you really need to tell a special needs parent that it might be best if they considered themselves to hit a reproductive dead-end?  I know people have morbid curiosities about whether or not we'll have more children, but I tend to feel like this falls into the category of nobody's-damn-business.

20.  "I don't know how you do it!"  I realize that most people intend on this being a compliment, but I think that most people also don't think about what they're saying when they say it.  What alternative do I have?  Of course I do all of this...I have to do it.  You would too if your child had special needs.  It's just life.  Sometimes life hands you everything you've ever wished for.  Other times, you get put on a detour.  Sometimes, you wind up hundreds of miles away from your destination, but life goes on, and so must we.  So, I respond that I'm not a super hero or anything like that; I'm just a mom, and I'm doing what I think (what I hope) every other mom would do with a child with special needs.  Maybe we all do it in a different way, but we all do what we must for our children and our families.  And you could, too...if you were in my position.

I think the biggest thing that I've learned is that people feel like they have to say something to you.  I'm not sure why that is, and maybe it makes me sound like I'm anti-social, but I just don't always feel like something needs to be said.  Maybe the thing that most special needs parents need is someone to listen. We often have fears and worries bottled up inside us and those thoughts don't disappear.  As soon as one issue is tackled, like speaking, another crops up, like puberty (thank God I'm not there, yet).  These experiences are vastly different when you have a child with special needs and it doesn't always do to compare our kids to others.

Instead, what would be best is to just be someone to listen and be open-minded.

Friday, January 27, 2012

Treading Water

Normally, I try to encourage people that autism isn't the end of the world.  That's why this is going to be a very hypocritical post.

Tonight was not my night for advocacy or heroism.  Tonight was a night of feeling overwhelming defeat. My boy had been better today, so I was optimistic for the evening.  When I got him up from nap, he headed straight for his net swing, and I gladly obliged.  When he said "down", I let him down.

Then the storm came over us.  I still don't know what was wrong.  The tears and the screaming seemed to wash over him like a tidal wave.  Within minutes, he was unreachable.  All I could do was stand on the shore and watch it happen.  I wish that I can look inside his mind and see what piece of this puzzle I am missing in this moment.

I watched him fight with himself for what seemed like ages.  He clawed at his skin and I pulled his hands away.  He stomped and sobbed.  He ran to the light switch and I turned it off.  He ran to the window, so I shut the blinds.  I tried to block everything out for him.  I sat on the floor with him, seeing him pace and lose control, and I did the one thing that is only natural for a mother to do - I reached out to him to comfort him, to pull him close, to try to make it okay.

He lashed out at me.  He clawed at my face, slapped me, and screamed louder, like I was torturing him.  I let him go and watched him run to the safety of his foam letters.  I listened as the usual refrain began, "A...T...A...T...", punctuated by residual gasps and sobs.  I watched and my strength drained out of me.  I could not help but let the tears flow, softly at first, but then like a torrent engulfing me.  I try not to let them out, but I can't help it.

Through the flood, I look over at my boy.  His face is wet with the remains of his torment.  He's moved on to the next couple of letters, "D...O...D...O...", and his breathing starts to stabilize as the gasps disappear. I let out a whimper, beckoning for his attention, "Jack?"  He doesn't flinch or look up.  I creep closer and am now less than a foot from where he sits waving the "D" and "O" in front of his face.  "Jack?"  He doesn't respond.  I can't stop the tears now.  I'm sobbing, sobbing like I haven't sobbed in a long time.  My little boy is sitting right before me, but he's gone all the same.  It's just him and the letters...it's like I don't exist.  He doesn't look in my direction.  He doesn't notice me crying.

The optimism I try to have eroded tonight.  I couldn't help but let those thoughts enter my mind.  Will my son ever feel the emotions that the rest of us do?  Will he be able to convey those emotions in a way we can understand?  Will he ever enjoy being a part of our world, or will he always prefer to retreat into his own?  Will he feel the things - love, compassion, empathy - that make us human?

Does he care?  Does he even love me?

I have talked to parents with older children on the spectrum who assure me that their kids convey love and that mine does as well.  However, in the times in which the storm rolls in, it is these thoughts that come ashore in the aftermath.  The lack of awareness of my pain, my tears, is what brings me down and threatens to pull me under.

So, what do I do?  I do Floortime as though my life depended on it.  I wade into those waters day after day trying to pull my sweet boy's head above water so that he can see the beauty of the surface.  I hope one day that he does.

This is autism awareness, my friends.  This day.  It's about the things you can't see.  Sure, you notice the speech delay.  You notice the hands that flap so vigorously when he gets excited, as he raises to his toes as though about to take flight.  You notice the screams when it becomes too much.  You notice how he always has his letters.  You notice that he won't look you in the eye like other children will, because that's what you've been told to look for.  You notice that he can't do the things for himself that other children his age have been doing for what seems like ages.

You don't notice the silence.  The way he doesn't turn when I call, the way he tunes the world out, or the way he doesn't see my tears.  You don't notice how he can shut everything out, including those who love him the most.  You don't notice the way he won't give me a kiss or that he has never once given me an actual hug.  This is what makes autism particularly cruel to families.  You don't see how I love him with every ounce of energy I have within me and how I long for one hint of reciprocation of that love.

I have to believe he's in there.  It's up to me to find a way in.  It's up to me to show him my tears and help him understand.  I have to believe that this is something he's capable of feeling, these higher levels of cognition and emotion that make us uniquely human.

It's up to me to just be there - to tread water - until he does.

Thursday, January 26, 2012

Stupid Barometer

(Image Source: National Geographic)
It's been a rainy week in the ATL...

Rain is a hit or miss thing for me.  Prior to Jack being born, I loved rain.  I loved how it cools down the hottest of GA days.  I love the lower light levels of a rainy, overcast day.  I love falling asleep to the sound of rain beating down on my roof.

What I don't love is rain beating down on my kid.

My Facebook status tonight said it well...I was waving a white flag today.  It just seems like rain exacerbates sensory issues.  This evening, Jack wanted nothing more than to play with his iPad in the dark.  No, not just lower light levels, but he wanted every light off.  He wanted it to be quiet and dark, with the faint light of the iPad illuminating the room.

Unfortunately, there was little I could do but comply.  Otherwise, he was pacing, wandering, his system needing something, and I was powerless to figure out what it was.  He was screaming.  I watch him at these times and try to figure out what is going through his mind.  What is he experiencing?  It's obviously something that I can't understand, that I don't experience.  It is in these times that I feel absolutely helpless, like some other force has control of my child and all I can do is sit nearby and wait for the storm to pass.  Even reaching out for him sets him off.  He doesn't want my help.

Short of inventing a weather control device, I'm not sure there's much I can do.

It may sound crazy, but there are things that I would have called crazy one year ago that I don't find crazy now...like that Prevacid can affect the behavior of some people (but not most people).  Or that headphones can calm someone down.  Or that wrapping a kid up like a burrito can calm him down.

So, I don't find it unbelievable that things like the weather and barometric pressure can affect our kids' fragile neurological systems.

I think we're supposed to have another day of rain, so I'm just going to do an anti-rain dance and hope that  tomorrow's a better day.  I'll have the white flag waiting (and a bottle of wine)...just in case.

Special needs parents - what circumstances/situations/other things that you might not expect make your child's system disorganized or unbalanced?  How do you help your children when they get like this?

Wednesday, January 25, 2012

Do You Let Them Know Your Child Is Autistic?

Special needs parents out there - I need your help and advice.

I am not ashamed of Jack's autism at all, but I have never felt the need to tell every person we meet that he is autistic.  Perhaps it's because I don't think it's everybody's business.  Perhaps it's because I don't always have the energy to go through that explanation over and over again.

Sometimes, someone has said something to you about your child that hurts you so deeply that you fear that if you open your mouth to say "My son has autism," what will actually come out is crying.  Or screaming.  Or an incoherent string of obscenities.

So, you learn to have thick skin and take a lot of verbal abuse.  We get all kinds of questions from people who don't know Jack is autistic.  The question we get the most is "Can he have a (cookie/cupcake/lollipop/other food item that Jack doesn't eat?"  When I inevitably say "No thank you," people feel the need to push further, as though I'm depriving my child of the beloved treats of childhood.  On the contrary, if Jack decided tomorrow that he'd eat cake, I would buy him the finest cake and let him eat it for every meal.  However, Jack won't eat that, and he struggles to do so.  It makes him gag.  If someone tries to push food on him, he gets combative.  It's best to just decline before the meltdown ensues.

Instead, people either say, "Come on, just one cookie won't hurt!" or "Why not?" or "It's all-natural/low-sugar/some other bait tactic."  I then have to explain that he can't eat them.  Then they ask why.  It becomes a cycle, and it's exhausting.  I don't always feel like going through it.  I don't always feel like saying, "My child has problems with chewing, swallowing, and oral sensory issues."  Sometimes, I wish that people didn't feel the need to keep pushing.

Recently, we've had an experience in which someone made us feel very uncomfortable by making comments that made fun of Jack, not because of eating, but because of behavior.  We were out and didn't know these people, and in their defense we don't yell out "Our child is autistic!" every time we go anywhere.  Someone had moved a piece of furniture right in front of Jack.

Now, Jack's world relies on order and consistency.  Moving furniture disrupts the balance of order that he relies on.  Other people who don't know much about autism may not realize that, but change brings Jack tremendous anxiety.  He has a balloon-popping game on his iPad that he'll no longer play because  the balloons change from being round balloons to different shapes at an unpredictable point in the game.  He would scream and cry when this happened.  So something like moving a piece of furniture disrupts the predictability he needs.

Not that we expect for the world to cater to Jack.  We just want the world to understand.

So, when the furniture was moved, Jack began to scream and cry.  He tried in vain to push the furniture back into place.  He was hysterical.  When he gets like that, I feel nothing but pity for my little boy and helplessness at the fact that I can do so little to help.

I'm used to this.  This is my life.  It's tough, but I can deal with autism.  What I can't deal with is what came next.

Someone began to laugh and said, "This is the funniest thing I've ever seen!  A kid has a tantrum because a table was moved!"  This person even mentioned that it was something worthy of putting on YouTube.  I went to console Jack, but Brian scooped him up before I could get to him and shot the person an awful look.  I could tell that Brian was hurt, but he didn't say anything.  Neither did I.  I was afraid that if I opened my mouth, the tears would follow.

Just about the only thing that can make me cry is something involving my child.  My precious baby.  My sweet boy who cannot control the bombardment of sensory input and the confusion that results.  My angel whose little brain cannot handle the everyday things that you and I take for granted.  My precious baby who we probably shouldn't have put in that situation to begin with.

So, I scooped him up, grabbed my iPhone and his headphones, and let him self-absorb into Monopoly for a while, because he needed to escape.  I looked over at Brian and saw the upset clear on his face.  I felt lumps in my throat.

On the way home, we discussed the situation and how we might have handled it better.  We wondered if we should just tell everyone when we go anywhere that Jack's autistic.  Honestly, I don't know if I have the energy.  We discussed getting him a badge or a button, like the one above, but we feared that the badge would draw more attention to Jack than we (or Jack) would like.

So, special needs parents (not just parents of autistic kids...I could use everyone's input), what do you do in these situations?  How do you handle letting people know your child is autistic without creating a scene or a distraction?  How do you deal with the comments that people make towards you or your children?

Saturday, January 21, 2012

The Panic Surrounding the DSM-5

This is going to be a long and potentially controversial post.

To those of you who are not autism mamas, you're probably looking at the title of this post and thinking, "DSM-5? WTF?"  No worries, I'll give a little background before I launch into this.

The Diagnostic and Statistical Manual of Mental Disorders, known as the DSM, is the "Bible" by which doctors get the criteria for diagnosing children and adults with a variety of conditions, including all autism spectrum disorders.  Currently, the DSM is in revision IV, so you'll hear people refer to the current version as the DSM-IV.  The proposed update to the DSM will be revision 5, thus the DSM-5, which is likely to roll out in May of 2013.

Of concern (besides the fact that neurodevelopmental disorders are still lumped into the classification of "mental disorders"...but I digress) is the proposed changes to the diagnostic criteria for ASDs.  In particular, here is what the DSM-5 will do:

  1. Eliminate Asperger's Syndrome and PDD-NOS (what Jack is technically diagnosed with) and lump them with autistic disorder into a new diagnosis called "autism spectrum disorder".
  2. Change the diagnostic criteria for "autism spectrum disorder."
  3. The addition of a severity "grading" scale.
On Friday, I joined in on a Live Webchat with Dr. Geri Dawson and Lisa Goring of Autism Speaks as they attempt to address the panic that resulted following the release of a New York Times article on Thursday that suggested that many individuals on the autism spectrum would be excluded from the new DSM-V definition.  While I normally am a big advocate and fan of Autism Speaks, I feel as though they could be a bit less ambiguous in their answers to questions that will greatly impact the lives of the millions of people for whom they advocate.  I felt the ambiguity simply leads people to make incorrect assumptions for themselves.

That being said, I really feel there is no need to panic.  Seriously.


First, I believe the study to be seriously flawed.  I am a big fan of reading primary sources and abstracts,  and yet I have not found a single place in which the study in question has actually been published.  It hasn't undergone peer review.  In that regard, I don't consider it valid...yet.

Volkmar, the author of the analysis, was at one point on the APA committee, but then resigned.  After that, this analysis comes out.  Is that the result of Volkmar disagreeing with the committee?  Possibly.  Is it the result of Volkmar leaving with a bad-taste in his mouth?  Possibly.  I think that scientific bias must always be considered when evaluating the validity of studies which, through design, can be made to say anything.  After all, scientists are people, too.

Aside from that, I believe the study design to be flawed as well.  From my understanding, the study assesses the patient records - not the patients themselves - to determine whether or not they meet the DSM-5 criteria.  Why is this wrong?  Because doctors are human.  They don't write down every fact, every quirk, every nuance that they see in a patient.  Believe me, when I go to Dr. DP with my list of comments and concerns, it's PAGES long.  That's not everything, either.  A doctor might take all of these details into account when making a diagnosis, yet they may not record all of it.  Thus, patient records lack critical pieces of data reflecting a patient's condition.

In addition, the data used was from a very narrow group of individuals - those who are particularly high-functioning.  Thus, applying blanket statements like "many individuals will be excluded" are simply not applicable because it doesn't take into account a demographic representative of the entire ASD population.  To do so, one would need to look at all levels of functioning, not just the highest of the high-functioning.

Also, the data he uses is from 1993.  That's nearly 20 years ago!  Our understanding of ASD and the way doctors evaluate and examine it has changed drastically since that time.  Aspects of ASDs that are considered in the new DSM-5 might not have even been considered by the doctors assessing these patients in the early 90s.  It's not that the patients didn't necessarily have these characteristics, but that they weren't considered relevant to the patient's ASD diagnosis.  For example, much more weight is placed on sensory issues these days.  A patient with sensory processing problems in the early 90s might have demonstrated sensory issues, but a doctor might not have considered it critical to the ASD diagnosis.  So what does he do?  He doesn't include it in the patient records because it's just another "quirk" of that particular patient.  In the new DSM-5, sensory processing issues are considered one of the behavioral criteria, but a researcher might conclude that a patient in 1993 did not have this issue if it weren't included in the patient record.

While I am bothered by the passing off of pseudo-science as actual peer-reviewed science, I am incensed by the following quote from the New York Times article, as stated by Dr. Fred Volkmar, the author of the analysis in question in the Times article.  He claims that the "changes would narrow the diagnosis so much that it could effectively end the autism surge."  He goes on to say that we "would nip it [the autism surge] in the bud."

This is dangerous territory we're going down here.  

My son has a neurological disorder.  Suppose someone decided tomorrow that the diagnostic threshold for cancer was not stage 1 cancer, but what might be considered stage 2?  Everyone with stage 1 cancer might lose insurance coverage for treatments such as chemotherapy, radiation, and surgery.  Insurers decide what is "appropriate treatment" based on the diagnosis code provided.  There would be an uproar among patients.  Suddenly, you would have to be more severe to get treatment.  It might also effectively "win" the war on cancer.

Or, better yet, imagine if our country could simply lower the poverty line.  Suddenly, millions of people might not qualify as living below the federal poverty level and thus might not qualify for social services.  Would that reclassification mean that those people don't struggle?  Of course not.

This is what many parents perceive is happening with the DSM-5 revision.

The fact that a body of psychiatrists can debate and alter what we define as autism does not make a single one of the people who currently have diagnoses not autistic.  Call it whatever you want, but something is disabling America's children and relabeling it and redefining it won't solve the epidemic.  They will still be DISABLED.  Calling the epidemic something else, therefore eliminating it, doesn't solve an epidemic.

That said, I don't believe the changes to the DSM-5 are going to rule out as many individuals as parents fear.  If you read the proposed changes in the link above (and all autism parents, I highly suggest that you do), you will discover that many aspects of the new criteria seem more broad.  Indeed, Dr. Catherine Lord of ADOS fame says in the same NY Times article that projections have placed the new criteria as including far more than will be excluded.

Before you pass judgment on the appropriateness of the new criteria based on a single article and study meant to stir up controversy and attention (which it succeeded in doing), I urge you to view the criteria yourself using the link above.  Consider it in the context of your child.  Indeed, when I look at the new criteria I see that Jack would very easily meet it.  Granted, Jack isn't as high-functioning as some kids, and I know that parents of the highest functioning children have the most to lose here.  If anything, I believe that the new criteria will help capture children who lay right on the border of ASD/not-ASD, because it allows for consideration of sensory issues, it is not dependent on speech delays, and it recognizes that autism exists as a spectrum.

As always, people are resistant to change.  Many people, particularly those with Asperger's, don't like the loss of identity that will come with being lumped in with the general ASD population as a whole.  Higher-functioning individuals feel as though being potentially taken off the spectrum will take away their voices for advocacy for their lower-functioning counterparts on the spectrum.

As far as individuals worrying about the loss of services, I don't see how this is any different than what we face right now.  School districts have to provide your child what they need to access the curriculum and EI has to provide early intervention for children who quality based on significant developmental delay...nothing more and nothing less.  If your child has significant speech and fine motor delays that require ST and OT in order to access the curriculum, it doesn't matter if your child has a diagnosis or not.  The same goes for educational support.  Now, school systems try to pull these services from our kids anyways, so I think that (unfortunately) it's going to be a fight between parents and government providers no matter what.  Parents will ALWAYS have to advocate for their children.

Insurance coverage...that's another story.  I'm sure insurers will try to finagle some way to exclude various people from coverage, but that to me is the result of us not having mandates in place to compel insurers to actually treat ALL of the their patients' medical conditions (yes, autism is a medical condition).  However, living in the great state of Georgia with crappy autism mandates (which is how our insurer is allowed to provide Jack only 20 visits annually with no appeal options) means that we fight with insurers regardless.  The DSM-5 might change that fight, but the fight will still exist.
I honestly don't see how the DSM change is going to strip very many people of their current diagnoses. I believe it will, eventually, make it easier for individuals to obtain coverage and services by lumping them all together under one diagnosis.

My opposition to the criteria change in the DSM is not so much because I don't think the criteria are good (I do) or because I fear Jack will lose his diagnosis (I don't), but because it turns something as important as our children's lives into a matter of semantics.  It will affect insurance coverage and services for many during the reshuffle.  For adults, they may lose SSI or Medicaid, simply because they no longer have a diagnosis.  Does it make them any less disabled?  No!  So, what do we call these individuals, since we are a society so bound by labels?  Once we determine that, what happens to these individuals during the inevitable waiting period it will take before governments and insurers catch up with the new terms?  These things don't happen overnight, and insurers and governments will be more than happy to have a reason to spend less on social services.

I also don't like the idea that we can simply change semantics and make an epidemic disappear.

What I really wish is that the APA and framers of the DSM revisions could put efforts and energy into solving the problem.  Redefining the problem doesn't solve it.  Figure out what is happening to our children!  There are so, so many!  Figure out why my son won't hug me, or look me in the eye, or point something out to me!  This is the one point to this whole debate that makes me want to scream.  Please, I beg you, figure out what it is that causes this so that we can prevent it in future children!  Put your energies into that, rather than debating what defines our kids as "autistic".  This is an epidemic, and simply redefining it won't help the millions who are autistic, regardless of what you choose to label them as being.  Instead, stripping them of their services will leave a generation of people unprepared for the demands of adulthood and dependent on social services and the welfare system when they cannot maintain gainful employment.

I'd like to open this up to discussion.  Please feel free to comment on the proposed revisions, your thoughts and fears on the issue, and what you'd like to see (or not see) happen to the diagnostic criteria in the future.  Don't feel like you need to be a special needs parent to respond.  This is an issue that invariably affects our entire country.

Friday, January 20, 2012

The Oxygen Mask

Keep your tray tables in the full and upright position.
Fasten your seat belts, moms.  It's gonna be a
bumpy ride.
I've heard several special needs mom bloggers refer to this year rather optimistically as "The Year of The Oxygen Mask."  Why oxygen mask, exactly?  Well, when you're on an airplane, the in-flight safety video/demonstration (that we all ignore) says that you should fasten your own oxygen mask before helping others around you - including your children.  Why?  Because, if you can't breathe, you obviously can't help your kids.  You can only truly help others when you are okay.

I've had several friends - all of whom don't have any kids with special needs - say recently that they needed a break.  I think some people almost feel guilty saying this to me, but I have one resounding answer for you all...

YES!  YOU DO NEED A BREAK!!!


"The Year of the Oxygen Mask" doesn't need to be exclusive to special needs moms; all moms could use an oxygen mask every now and again.  What we special needs moms deal with may seem overwhelming at times, but it in no way diminishes what our typical counterparts go through in the day-to-day cycles of being a mama.

While my son deals with therapy, learning to talk, learning to eat, and other developmental tasks, there are times when I see typical children Jack's age and I honestly have to say, "Damn!  I lucked out with this!"  For example:

  1. Jack doesn't whine.  He rarely expresses wants or needs.  We went to a toy store yesterday to get a birthday present for another little boy, and Jack barely even noticed his surroundings.  He just checked out and waved his letters in front of his face.  However, I look at the other kids who are even younger than Jack and they are begging for the toys.  The whining!  Oh, the whining!  The moms screaming, "Well, you're showing everyone that you're a terrible two!"  Sometimes, I look at the younger kids who are more verbal and think how much I'd long for just a snippet of that, but the whining?  Not so much.
  2. Jack still acts like an infant in many ways.  How is that good, you say?  He's a creature of relative simplicity.  He interacts with the world in terms of sensory stimuli.  Give the kid some plastic letters, his therapy swing (a big version of a baby swing), and a bead maze and he's set for months.  He'll be enchanted by anything visually stimulating (today it's been a paperweight that has beads that roll down a spiral ramp within it).  He has a whole house full of toys, but he really doesn't need/use 99% of it.  It's nice that he needs so little of the material stuff!
  3. No peer pressure.  None.  I hear other parents talk about how much they hate Yo Gabba Gabba and all of the other hell that kids' channels produce.  Their kids all tell each other about them.  Jack doesn't care about any of it!  Jack only likes Super Why!, and he's about the only kid that does.  When your kids are begging you for Abercrombie, mine isn't going to be falling victim to the peer pressure that trend.  Sweet!  My bank account will appreciate that.
  4. No junk food battles.  Why?  He doesn't eat it!  All of the Oreos are MINE.
  5. No clinginess.  I want Jack to want me to interact with him more than anything.  I would give anything to have him interact with me, to have him want to play with me, and to want to include me in his world.  Instead, Jack can go all day without regarding me (except to get me to open his box of letters...which I keep closed all the time for this very purpose) or without looking over to see if I'm there, watching and interested.  I hear other parents talk about how their children are like growths on them, constantly needing attention and wanting their parents to play.  I can totally get where this would get old, too.  When I need to start some laundry, I just do it.  No fussing, no crying.  It makes it a bit easier to slip in little chores throughout the day.
  6. No competition!  I hear other moms compete with each other.  Believe me, I was trying to be a part of that world once, but then I was always at the bottom of the "my kid is a friggin' developmental prodigy" pecking order.  Once Jack got diagnosed with autism, I got to drop out of that race!  Other moms don't try to rub it in my face that their kids do more than mine, because it's a given.  It's liberating to not care that my kid is behind all the others.  Especially this time of year, as preschool registrations begin, it's comforting to know that I'm not competing in that fray this year.  I feel very comfortable with the fact that Jack is going to special needs pre-K and that there is little competition involved with that transition!  I don't envy you typical moms waiting in those unnaturally long lines to get one of 20 spots at a top preschool.
Typical moms have to worry about what they can do to give their kids an edge in this world, just like us special needs moms.  That "edge" just has a different definition for them and us, but it is still the same worry.  We all worry about how to make sure our kids have what they need to succeed.  Success just means something a little different for the special needs mom versus the typical mom.

So, typical moms out there, I'm tossing you an oxygen mask.  Join us special needs moms in making this a year in which we promise to (but admittedly may not succeed to follow through with) take better care of ourselves.  We each need some down time.  Even us SAHMs do.  Our husbands may be at work all day, but moms tend to shoulder the emotional burdens and worries of the family...and that is draining.

So ladies, pour yourselves a glass of wine (or two!), let the hubby listen out for the baby tonight, and watch something really trashy on TV (I'm thinking Teen Mom 2) or something overly girly (I'm thinking Downton Abbey).  Eat something chocolate-filled and DO NOT (and this is CRITICAL) look at the calorie content of said chocolate item!

Enjoy your oxygen mask.

Wednesday, January 18, 2012

"Quality of Life"

Several days ago, I read a story about 3-year old Amelia Rivera, a little girl in New Jersey with a rare genetic disorder called Wolf-Hirschhorn Syndrome who is in need of a kidney transplant.  Her story has been lighting up the special needs blogosphere for very unfortunate reasons.

You see, little Amelia's family went to meet with doctors and a social worker at Children's Hospital of Pennsylvania (CHOP) for what they thought was preparation for their daughter's impending transplant.  They thought everything was practically a done-deal.  Upon getting into the meeting, they received news which I can only imagine would punch a parent directly in the gut - that their precious little girl was not going to receive a transplant due to her cognitive impairment.  Amelia's family said that they come from a large family and that they have family members willing to serve as living donors to Amelia.  The transplant team stated that it does not matter.  She is not eligible due to quality of life issues - her cognitive delays.

Please hear this once more.  This child was denied a transplant - even through a family member living donor - because of developmental delay.  Because she would need medications and would need assistance with this in later years.  Because she would not have a "good quality of life".

Now, I want to preface by saying this - people have been attacking CHOP for this decision.  I agree with that, but the important thing to remember is that this is the decision of a select few individuals and NOT the hundreds of other doctors, nurses, and support staff at this hospital.  A few bad eggs should not reflect the hospital as a whole or those individuals that dedicate their careers to the health and well-being of the children within its walls.

I also understand how the transplant industry works.  Before I was a full-time special needs mom, I worked for a company that processed transplant tissues.  So yes, I get that there are criteria for both donors and recipients.  Some of that is designed to protect patient safety.  Some is to first do no harm.  Some, as I imagine, is to save the hospitals and physicians from liability issues.

What I am appalled to discover is that developmental delays are indeed taken into consideration in some transplantation programs.  According to an article published in the November 2008 online journal of the  International Pediatric Transplant Association, 43% of programs studied "always" or "usually do" consider neurodevelopmental delay in their transplant decisions.  Only 39% said that they "rarely" or "never" do.  The use of developmental delays in the transplant decision making process was said to be "varied and inconsistent across active programs."

As the mom of an child with autism - a neurodevelopmental disorder - this scares the hell out of me.

I do not expect my son to need a transplant organ, but what if something happened and he did?  Would a team of people look at my precious little boy and determine that because he was autistic, he did not have a good quality of life?  Would they look at the numbers representing his current functional status to determine how worthy of a person he was to have his life saved?

While I have not fought with transplant teams, I have fought with insurers over this same issue.  My son needs therapy to continue to progress and develop.  It's not optional for him...he has to have it.  However, when insurers tell you that they don't care whether or not your child can eat and feed himself, whether or not he can tell you he loves you, and whether or not he can live an independent life one day, you begin to realize just how little children with developmental disabilities are valued in the eyes of some when it comes to weighing them against financial and liability concerns.

Shame on them.

Say what you want, but every life, every child - every last one - is precious.  Jack does not suffer a poor quality of life for delays.  Nor does sweet little Amelia.  Our children have pervasive challenges, but live rich, happy lives.  Do they need support?  Yes.  Does this make them less than worthy or life?  Does it make them less than human?  Not a chance.

As for little Amelia, regardless of their decisions to list a child on the transplant registry, she has living donors willing to undergo the procedure.  As long as a person is of legal age to consent and can give informed consent, having been educated on all of the risks of the procedure, there is no reason for the hospital to deny this family - this little girl - the chance at life.  Without that chance, Amelia will not survive.  That is to deny her not just a good quality of life, but any life at all.

Who are they to judge what a good quality of life is anyway?  I imagine that Amelia, like Jack, has much to offer this world.

I applaud Amelia's parents for calling up the troops, rallying those of us in the special needs community, and continuing to fight.  This is an issue that affects ALL of our children.

Please help support Team Amelia by signing this petition at Change.org to try to convince CHOP to give this sweet little girl the transplant she needs to survive.  Remember that all children - all children - are precious and worthy of a shot at life.


Tuesday, January 17, 2012

One Packed Weekend

Today is a rainy, yucky day.  My living room looks like a Scrabble board factory has exploded, because there are letters everywhere.

Ah, the serenity that is our house.

We've had a big weekend.  We got to meet my new nephew, who is by far one of the most precious babies I have ever seen.  It seems like ages ago that Jack was that small.  I wish I could have enjoyed his babyhood more.  He always struggled so much with eating and vomiting that I was just waiting for him to get older so that he could eat better and I could worry less.  I wish I had the chance to enjoy it more with Jack.

We also got our new cable installed.  After 3 years of sub-par service with our previous cable company, multiple complaints to customer service, and multiple visits to attempt to fix the problem, only to tell us that we needed the whole system rewired (at our expense, of course), we switched to AT&T U-Verse and I feel like we have come into the light from the Dark Ages.  We have a whole-house DVR (for the same price as our single-room DVR, I might add) that can handle all of the episodes of Super Why that Jack could ever want, along with some throw-ins of The Big Bang Theory and Teen Mom 2.

I'm also feeling the peaceful calm that comes with knowing that we don't have to go to another appointment with Dr. DP for another 6 months.  Not that I don't love the team at that office, but let's face it...specialists stress me out!  You're always waiting for the other shoe to drop, when all you want is an uneventful visit.

I'm starting to feel like the endless supply of doctor's appointments, therapy appointments, visitors, and other events is truly endless.  However, I am increasingly impressed by my own ability to handle it all.  I'm also more confident in my ability to handle it all and make good decisions on Jack's behalf.  When we come through busy weeks and weekends relatively unscathed, I can't help but feel like I've got this.

Perhaps, that's progress in and of itself!  It's a good day.  One in which I feel like I can handle this.  As they say during the opening credits of The Mary Tyler Moore Show, "You're gonna make it after all!"

Friday, January 13, 2012

Super Powers I Wish I Had...

I've been trying to make up today for the lack of home therapy and other various household tasks that has occurred due to this being THE WEEK FROM HELL PART DEUX.  We've been crazy busy, so I naturally thought that I'd cram a bunch of Floortime into this morning in an effort to make up for the week and what will be a busy weekend as well.

As a result of the insanity, I've not had any breakfast or lunch all week and I'm living on a steady diet of caffeine and exhaustion/adrenaline.  So, of course, today would be the day that I decided that eating lunch might actually be a good plan.  There is only one thing that will satisfy my lunchtime craving today...a Publix Ultimate Sub on White, with minimal lettuce and pickles.  No mayonnaise, please, because I'm a mayonnaise snob (Hellmann's only).

There's just one problem.  I have a sleeping toddler upstairs, and legally I should not leave him alone in the house.  Not to mention it would make me just about the crappiest parent ever.

So, as I'm trapped in my house, bordering on passing out from exhaustion on the couch and hallucinating about a sub sandwich, I began to think...my life would be so much more simple if I just had...

SUPER POWERS.

Now, there are plenty of posts out there from various mom bloggers that will claim that moms do indeed have super powers.  After all, we can both create life, somehow give birth to it (if you've ever had a baby, you'll know why this is a feat in and of itself that seems physiologically improbable), and nourish the child by producing food for it from your own body.

These aren't the super powers I'm talking about.  I need ACTUAL SUPER POWERS.  So, if I could make myself some super human version of myself, what would I need?

First, there's the obvious...I'd need the ability to cast Harry Potter spells.  I promise, I'll use my powers for good, not evil.  In particular, here's what I'd like:

  • Accio - because then I could make anything come to me.  Accio Chinese food!  Since Jack doesn't respond to my command to "Come here", I could "Accio Jack!"
  • Petrificus Totalus - for when Jack bolts.  I know it seems extreme, but telling Jack to "Stop" doesn't work, so I could simply freeze him temporarily.  Problem solved!
  • Lumos - because my night-vision sucks.
  • All of the housework spells that Ron's mom uses - for the obvious.
I also think flying would be good.  That way, when Jack's hard to get out of the house, I can just grab him and fly him to our destination.  However, he hates being carried like that, so for fear that he might squirm out of my arms and fall several hundred feet, being able to disapparate might be preferable.  However, given that I get extremely motion sick, I'd probably throw up every time I did it.  So, transportation super powers will have to be considered further.

I would like super human strength.  It seems like the times that Jack wants to be carried always involve me having tons to carry anyway.  It might also help be get groceries out of the car faster.

Being clairvoyant might be nice, too.  I never can tell what people are thinking when they talk to me and I've always struggled socially that way, so being able to read their minds might be a better alternative than always having to guess at what a person's intent is.  This might be awesome for me with Jack, because I could just read his mind!  I'll bet that the majority of the time, he's thinking about letters.  "A...B...C..."

However, that helps me little today.  I think I'll just take a nap and dream of a sub...





Thursday, January 12, 2012

9-Month Post-Diagnosis Check-Up

It's been a long day, but I felt the need for a quick post about our visit with Dr. DP today.

What can I say?  I love those people at his office!

Everyone was impressed with Jack's progress.  The last time we had an appointment, Jack was barely speaking at all, and Dr. DP didn't get to hear a word of it.  This time, however, he got to hear that sweet little voice of which I never tire.  Sure, Jack was stimmy, echolalic, and really pissed off when Dr. DP went to measure him (he HATED the sound of Dr. DP's measuring tape as it clicked), but there was progress to be seen!

Dr. DP felt that our program is right on, and with the addition of therapeutic listening, special education preschool, and a few other things that Jack will have a well-rounded program that will continue to foster growth and development.  There is no reason, he says, why we should not continue to see gains.

He reminded me, of course, that it'll take time.  He also had some interesting insights into Jack that I never really considered:

  1. Dr. DP says that Jack learning to speak is like the rest of us neurotypicals learning a second language.  His processing is different than ours.  He learns differently.  To Jack, it's like he's been thrown into the streets of Madrid without an interpreter and he's forced to learn Spanish in order to survive.  Interesting insight.
  2. The reason Jack loves letters is that they are predictable.  They don't change.  An "A" is an "A"...always.  People, however, change and are almost impossible for him to understand.  Thus, he self-absorbs into his letters because they are safe.
  3. Jack probably processes information visually far better than through hearing or any other sense.  Also, he can either process information visually, or verbally, or through touch, but not more than one way at a time.  So, if he's in a stimulating environment, he may not be able to hear you.  Or, if he's listening, he might not look at what he's doing.
Dr. DP agreed that the areas that will plague Jack from here on out and that we'll be working on forever are pragmatics (social communication) and social skills, but that we should start to see some gains in these weakest areas once he starts school.  The sensory issues will be there, too, but the hope is that Jack can learn to cope with his neurological differences that cause him to take in sensory input in a very different way than the rest of us.

We have a lot of changes coming up for us and a lot of things to consider.  Dr. DP, as always, provided just the guidance we needed to help make some of those decisions in a more informed manner.

I'm just so happy that he sees great progress and that he's pleased with Jack's program, both in-clinic and home-based.  The best part that Dr. DP noted was that Jack seems happy.  He has a lot of issues, but he is happy with his life.  He doesn't feel sorry for himself.  He doesn't regret having autism.  Sure, maybe he's a little young to feel those things, but he doesn't see his life as harder than anyone else's.  In spite of it all, he's happy.

Hell, if that's the only progress we make from here forward - for Jack to just be happy - I'll feel as though I succeeded.  

Wednesday, January 11, 2012

Overflowing

Okay, so I was going to post today about Christmas.  Really, I was!  It'll happen, but not today.

Today is all about gratitude.

I created Jack's Walk Now for Autism Speaks team this week - called A Journey for Jack.  We set a modest fundraising goal for our first walk, I added Jack's story, and off we went.

The response has been overwhelming.

Sure, we're only a few days into fundraising and most people don't have their teams set up yet, but A Journey for Jack currently ranks #6 in the state in terms of money raised for Autism Speaks.  In less than 30 hours, were already 1/3 of the way to our fundraising goal.

Holy cow!

I am absolutely overwhelmed by the generosity of everyone.  Not only have people been donating to Autism Speaks through our page, but I've had several people repost the link to A Journey for Jack on Facebook to gain more support for this very important cause.

We have still 4 months until the Walk and I'm so optimistic at what we can do for individuals with autism.  My hope throughout our journey has always been that Jack's life could bring awareness to the realities of autism, the importance of early diagnosis and intervention, and the needs for support and acceptance that individuals on the spectrum deserve.

It is my hope that Jack's story touches people and that they want to help.  Or maybe they look kindly on a family with a struggling child at a restaurant.  Or maybe they don't question the need for government spending for developmental disabilities.  Or maybe they can just say, "I know someone with autism.  He's awesome."

Today, my heart is overflowing.  Thank you, each and every one of you, for your support of Jack personally and of Autism Speaks.

If you'd like to help, you don't just have to help Jack's team!  This is about each and every person on the autism spectrum!  Donate your time and join us at the Georgia Walk Now for Autism Speaks.  Or if you can't be there, donate to Autism Speaks.  Or, if you can't do that, simply spread awareness about the needs and realities of the autism epidemic in our country.

Monday, January 9, 2012

The Start of The Week From Hell Part Deux

I was going to post about Christmas today.  Seriously.  I was.  This week, survival is the name of the game.  Survival and sanity.  If I make it out with one or both of those, we'll be doing awesome.

However, this is the week that shall go down in infamy as -

THE WEEK FROM HELL PART DEUX.

The first WEEK FROM HELL occurred in late March of 2011.  It was in this week that I had a dentist's appointment, my wisdom teeth removed, Jack's 2 year check-up in which his pediatrician finally told us that she believed he was on the autism spectrum, plus meetings with BCW to start Jack's evaluations and services.  And I was trying to keep it from everyone until we got a diagnosis.  And I was a bit stressed.  And at the end of the week, my face felt like someone took a sledgehammer to it post wisdom teeth surgery.

Tons of fun.

This shouldn't be as stressful, but we've got a lot crammed into a little bit of time.  Here is a brief synopsis of the week:

Monday - Special Needs Preschool Hearing Screening, Special Instruction, Floortime (2-3 hours)
Tuesday - Speech Therapy, Floortime (2-3 hours)
Wednesday - Occupational Therapy, Floortime (2-3 hours), plus the nervous tension that always comes prior to...
Thursday - Check-Up with Dr. DP, Aquatic Physical Therapy, Floortime (2-3 hours), and a well earned beer and Parks and Recreation session
Friday - Floortime (2-3 hours), and prayers that Jack will nap so that I may PASS OUT
Saturday - Special Needs Play Group, New Cable Installation (because we wanted to make our lives more stressful), Floortime (2-3 hours), and more than likely some grumpiness from one or more of us because WE'LL BE FRIED.

And here I was thinking that I could use a night out.  Ha!  I'll be more likely to pass out at 8 PM than go on a date.

I imagine that the next WEEK FROM HELL will be the week of Jack's preschool evaluations, because he's going to have his educational, speech, and OT evaluations, in addition to the vision screening they didn't do today, all in the same day.  I pity those people.  Really, I do.

Am I taking on too much?  I don't know, but it all has to get done, for Jack's sake.  So, excuse me while I attempt to nap for a few minutes while Jack's naps prior to the next round of craziness occurring.

Friday, January 6, 2012

The Big Autism Theory

Ladies and gentlemen... honored daughters... while Mr. Kim, by virtue of his youth and naivety, has fallen prey to the inexplicable need for human contact, let me step in and assure you that my research will go on uninterrupted and that social relationships will continue to baffle and repulse me. Thank you.  - Sheldon Cooper, The Big Bang Theory



Lately, I've become a bit of a fan of the show The Big Bang Theory.  What can I say?  I relate to the characters.  I was always the nerd.  I still am the nerd.  Luckily, I just happened to find another nerd to marry me.

In particular, I relate really well to Leonard and Sheldon.  I love physics, probably more than is normal, and their Star Trek obsession rivals my fixation with Harry Potter.  Sheldon just seems like someone I could get along with.

One day recently, I was watching the show and suddenly taken aback.  Let me describe the scenario.  Penny is telling Sheldon off, but Sheldon doesn't get what Penny's saying, so Leonard pulls out a "Sarcasm" sign to alert Sheldon to when Penny is using sarcasm.

Holy crap.  I got it.  I got why I could relate to Sheldon.  He is absolutely insistent on routine, from where he sits to where he eats on specific days.  He fixates on physics, trains, and Star Trek.  He could care less about social interactions.  Hell, he doesn't get them.

Is Sheldon on the spectrum?!?

I don't know, and apparently I'm not the first to wonder.  The show's producers, for their part, say that they choose not to give Sheldon a diagnosis of any kind and refer to his behavior as "Sheldon-y".  In my opinion, if he were on the spectrum, it would be an extreme exaggeration of the social problems most autistics have, but I find that TV tends to exaggerate that in autistic characters (think Max on Parenthood) anyway.  Every kid and adult on the spectrum that I've ever met doesn't quite that robotic.

However, it would seem that Sheldon could be on the spectrum.  There's the obvious social issues (he even goes so far as to document social encounters to try to categorize and understand them, as well as creating a "Friendship Algorithm" for his own use), communication issues (he has big issues with pragmatics, obviously), repetitive behaviors and adherence to routine (he actually twitches if forced to sit in a seat other than his usual one), intense interests and fixations (Star Trek), and sensory issues (every part of his environment needs to be controlled).

Whether or not he's on the spectrum, I think Sheldon is someone to look up to.  Sure, he could care less if he's alone, or liked.  However, he is happy with his life.  He found a niche and functions within it.  He lives independently (yes, he has a roommate, but his roommate doesn't care for him).  He doesn't fit into society's norms, and that's okay.

Thursday, January 5, 2012

"Hi Twee."

When the Christmas tree first went up, Jack acted a bit apprehensive.  So, we started prompting Jack to say "Hi tree" when he'd come downstairs to give it some familiarity and a place in the routine.

As with many things, it not only became part of the routine.  It became a script.  He has gotten to the point where every time he comes downstairs, he says "Hi twee!"  It's cute, and I can't help but love the way he says "twee", but it's creating a slight problem.  Like he tends to do, it has become ritual.

Flash forward to this, the first week of January 2012.  It is getting to the point where we probably should take down Christmas decorations.  We're procrastinating a bit, both because we've had a really busy holiday season and because we are fearing the reaction we'll get out of Jack.  Sure, not having the tree will become routine soon enough, but we may have a meltdown or two before that happens.

I'll admit that I'm reluctant myself to take down the tree.  It was a busy, therapy-filled, no-time-to-rest, where-the-hell-did-the-holiday-go kind of holiday season.  It was gone just as fast as it came.

Really, I didn't feel like I got to enjoy it, but keeping the decorations up won't make Christmas happen again in the next couple of weeks.

We'll take it down this weekend, but we'll enjoy the soft twinkle of the tree just a few days longer.

Wednesday, January 4, 2012

"A Child Who Has Autism" vs. "Autistic"

There is a debate among those in the autism community as to what is the correct way to address individuals on the spectrum.  Should we refer to them with “people first” language, i.e. a person with autism, or as simply autistic?

I’ll never understand why we harp on semantics so, but here are my thoughts on this debate.

If you look at who insists on one term or the other, you’ll find that parents are the ones who push for “people first” terminology, whereas autistic individuals prefer to use the term “autistic”.

Hence, this is why I refer to Jack as “autistic” instead of as “a child with autism”.  I’m going to go by the wishes of the autistic individuals themselves.

There are some good reasons to be unafraid of the term “autistic”.  It’s what they are.  You are an American (or whatever nationality you identify with), and you never say that you are a “person from America” when describing your nationality, do you?  You say “American”.  It’s who you are.  It’s an identifier that places you within a group of people – a community.

For so long, I think that no one could conceptualize the thought that developmentally disabled individuals could band together to advocate for themselves and their community, but that is just what we see with high-functioning individuals on the spectrum.  It is these individuals that can serve as role-models for the many children - and there are so many - who are on the autism spectrum.

It is this community which I want Jack to connect with and access.  Being an autistic individual makes him a part of a dynamic and growing community of neurologically diverse individuals.  Though his condition might seem to isolate him from others, there are many – so many – out there with whom he could identify.  Other children and adults who experience their world differently than do the rest of us.

Why would we want to take that from them?

I believe that many parents who use “people first” language do so because of the stigma they feel that the term “autistic” carries with it.  However, by choosing to not use that terminology, we further stigmatize it.  It becomes an elephant in the room. 

Instead, we should embrace our children’s diversity and say that it is okay to not only be autistic, but for our children to feel some pride in who they are and what they can do.  These young people have potential of which we can scarcely comprehend because that potential doesn’t match ours.  Hell, it may exceed our potential.  Their future success may not be measured on the same scales as their typical peers, but that by no means makes them less successful.

What we parents should do is impress upon the world that you can be both autistic and intelligent.  You can still lack full independence yet have a successful life and career.  You can flap your hands and still be taken seriously and be worthy of respect.

Autism is a disability, no mistaking that, and it should continue to be viewed as such so that those affected can continue to get the specialized treatments they need to progress; however, it is my wish that people could also embrace autism as a difference in neurology.  A different way of learning, thinking, relating, and communicating that doesn’t quite fit in with the world we’ve created.  A way of thinking that requires some accommodations so that we can harness the potential – and there is such potential – of the autistic individual.  A way of thinking that is both equal and different, but not less.  

Never less.

Tuesday, January 3, 2012

Resolved


A new year has dawned and I personally am elated to leave 2011 in the dust.  It was a year of struggles, bad news, and reinventing the wheel in our house.  I’m ready for 2012 to be a year of progress, new beginnings, and rediscovery.

It promises to be a year of change, which can be both liberating and perilous at the same time.  In the very near future, we will have Jack’s first IEP meetings and he will begin preschool, which is a big change in his life.  For me personally, I’d love to see some more progress in self-care skills that might make my life a bit easier.  I’d love for Jack to self-feed.  I’d also love for Jack to begin potty training.  However, I’ll be patient for each of these and gladly cheer him on when he’s ready to tackle these tasks.  Good things come to those who wait.

One thing I won’t do this year is to create a resolution.  I’m finding that on this path on which I walk, it is foolish to set goals.  To a degree, goals set you up for failure; however, progress that comes unexpectedly brings a world of joy.  Instead, I hope to sit back, support my son’s progress, and follow him in whatever direction he chooses to lead me.

For myself, I’d like to say that I’ll take more time for myself, but I’m not sure I will.  To hell with that as an expectation.

Perhaps, the best “resolution” would be to enter the New Year with no expectations.  Approaching life, taking the progress, and weathering the storms all comes easier without the “picture on the postcard” image of what life is supposed to be about.

So, I resolve to not resolve.  To not expect.  To not be too disappointed.  I resolve to live in the moment with my little boy and take the good and the bad. 

To each of you, I appreciate you more than you know.  A very Happy New Year to you all.  May the year be filled with life’s blessings to you and yours.