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The other day, my son Sawyer had a doctor’s appointment.  We did not tell him about it beforehand because then he just obsesses and tantrums about it for the whole day.  Why?  Because he likes going because he gets a free toy (or, usually, about 4 free toys) to destroy on the way home.  It’s one of his very favorite places to go, and if he knows he’s going beforehand, it’s an OCD nightmare.  So, we didn’t tell him our plan.  He went to school as usual with no idea I was going to pick him up early.

When it was time to pick him up from school, I went to his classroom and he was working alone at a table. He didn’t see me.  One of the aides said, “Look who’s here, Sawyer.”  He looked up at me and his face was completely blank for about 5 seconds like he didn’t know who the hell I was. (It was just that he was totally not expecting to see me in the middle of his day.  He has a set routine that they follow religiously, and mom showing up half way through was something to be processed.)  I told the teacher that we were going to proceed to the place where one gets checkups (yes we really ARE forced to talk like this!)  Then something really neat happened.

Sawyer’s face lit up and he smiled wide.  He jumped up, came over and gave me a big spontaneous hug.  These are to be treasured because he is quite stingy with them usually.  We got him ready and we left.  On the way to the car he hugged me again for a long time and said, “Thank you, mama!”  This, I admit, made me cry even though I wasn’t exactly sure what I was being thanked for.  Maybe he just needed a break.  Maybe he was just happy to be getting to go on an unexpected car trip.  One thing though,  he has NEVER thanked me spontaneously before.  Not once in 14 years.  We can prompt a thank you (and we do on a regular basis), but he doesn’t say it unless we prompt him.  So that was a really wonderful thing.

We went to the doctor’s office.  As soon as we pulled in he was very excited, but he didn’t tantrum or start obsessing (Doctor.  Doctor.  Doctor!)  He also didn’t tantrum in the office while we waited, he didn’t try to destroy anything or start yelling… he just sat quietly beside me and patiently waited like the other kids did.  In fact, it might have been the first time he passed, in public,  as “normal” since babyhood.  No one gave him a second look.  By this time, Iwas having a MARVELOUS time, and realized that a miraculous thing was happening, and I was going to enjoy the hell out of it while it lasted.

He was so good in the office that the doctor was floored and ecstatic (we are both used to a very different Sawyer) and was just gushing about this wonderful turnaround (which I assumed, wouldn’t last–hence the appreciating it while it’s going on thing).  Then, it happened.  The doctor told me that Sawyer was SO lucky to have us as parents because we were such great parents.  Wonderfully patient and loving.  Heroes.  Saints really.  And I deflated completely.  Sigh.

…Him don’t know us vewy well, do he?

Don’t get me wrong, the doctor didn’t mean to ruin anything for me, he though he was just giving us a compliment.  It just happens to be one of my pet peeves when people act like keeping your own CHILD who you LOVE at home and taking care of him because he needs you somehow qualifies you for sainthood.  It doesn’t.  Parents do many things just because you have to and you need to.  Things are not always sunshine and roses at our house.  In fact, our public face and our private face are quite different.  The patience I show Sawyer in public when he tantrums might or might not be extended to him when the same thing happens in private.  We are not perfect and if people think we are, we cannot help but fall.

Yes, Sawyer is difficult (that is an understatement!), but he’s my baby.  What else am I going to do with him but take care of him?  I don’t know anyone, not one person, who, if blessed with a child like Sawyer, wouldn’t care for him at home.  And this includes the doctor.  You deal with the cards you are dealt and that’s that.  I think it’s more probable that most folks cannot imagine actually LIVING like we do, day in and day out, and so we are both pitied and  saintified (yes, I know that’s not a real word!) by the masses.  Much like I cannot imagine how parent cope with their kids having cancer.  Yes, I suppose I COULD deal with it, if I had to, but I sincerely hope and pray that God spares me from having to walk that particular road.  It’s unimaginable to me, and those parents seem like saints to me–though I imagine my attitude annoys the hell out of them too.

It’s magical thinking.  No way could I handle that so THOSE people must be somehow more equipped to handle it than I am.  That’s why they got the disabled child and I didn’t.  The child with cancer and I didn’t.  God made them special, somehow.  He gave them more patience.  More kindness.  A double sample of love.   When in fact, we are just like you.  We could BE you if that was your destiny.  As for me, I didn’t ask for this, and I wouldn’t have signed on for this particular set of problems, had I had a choice.  But I didn’t.  And I trust God enough to trust Him with the details and how this all works out in the end.  I know He has a plan and a purpose for Sawyer’s life, and that’s good enough for me.

By the way, new toon up today.  I will try to (at least for this week) upload cartoons on Mon, Wed and Fri and see how that works out.

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Today’s toon is about how disabled children are often passed on from grade to grade without mastering the skills necessary to actually “pass” the grade.  I understand why it’s necessary for schools to do this, and I don’t disagree with the policy.  If a child is retarded or severely disabled and unable to perform to grade level, well… you just can’t hold a 17 year old back in kindergarten AGAIN.

We just had Sawyer’s first IEP meeting at the new school.  We’ve had one to three of these a year over the past decade or so at the old school, and they have all, almost without exception, gone badly.  We would push for things for Sawyer that he needed, and the school would refuse.  We would threaten to sue and the school wouldn’t back down.  We’ve talked to lawyers and we’ve had IEP meetings full of mucketymucks from the school district, the Principals and moderators and service coordinators and advocates.  There has been cussing and there have been tears (we were NOT their favorite family and I’m sure they were so glad to see us move!)  What we have never felt, from the old school, was that they took our concerns seriously.  We didn’t feel important or that they thought we were worth listening to.

Now Sawyer has had great teachers, and he’s had some marvelous aides.  I have loved each and every one.  But they have had their hands tied by the district on numerous occasions and it’s been frustrating as hell.  And THAT is where this cartoon came from.  It was born out of  the seething anger that comes when you realize that if you lived in another school district, your child might be a lot more high-functioning.  It was born out of the sad realization that my son has barely learned anything in 11 years of schooling.  He has few life-skills, no practical skills.  He cannot read or write.  Just what, praytell, have I been sending him to school for?

Yeah, yeah, yeah, I KNOW.  It’s not fair to expect the schools to teach him things he is not developmentally ready to learn to do.  They are overworked and understaffed and he is an extremely difficult, extraordinarily disabled child.  But I also think that letting him get away with doing the same “work” for YEARS because he can and will finish it on his own and you know you can head off a tantrum by doing this, is wrong.  He is teachable, but he doesn’t necessarily want to be taught.  He is teachable, but it has never been, and will never be easy or fun to teach.  He is teachable but he needs his own aide and he needs one on one instruction and he needs behavioral therapy and occupational therapy and tons and tons of speech therapy.  He needs to be WATCHED and he needs to be stretched out of his comfort zone no matter how much he might hate it.

A lot to ask, I know.  Which is why I don’t fault his teachers.  They try very hard with limited resources and staff.  …But it doesn’t make it any easier to bear.  My child is essentially being ware-housed until such time that he turns 21 or 22 and is finally  kicked out of high school with his certificate of participation and little else to show for it.  He has not been given up on… people have tried and tried to teach him things.  But if it’s not working, bring in a specialist!  Get him more therapy!  Figure out a way to reach him instead of trying the same thing day in and day out and then year in and year out while hoping for a different result.  I believe that’s the definition of insanity.  Sigh…

Anyway, to get back to my point… THIS IEP meeting was different.  It was much more informal.  It was small.  There was no one from the district there.  And they asked us what we would like to have for Sawyer and then set about trying to get it for us.   They showed us work that was new that they were forcing him to sit and perform (and he WAS!).  They had high expectations for him, and while he wasn’t exactly meeting them, he HAS upped his game a bit because he is expected to.

It absolutely blew my frickin mind.

So teachers, please don’t write me hate mail.  I understand how hard it is.  I GET it and I appreciate it.  This cartoon was written before this new IEP meeting, but I decided to run it anyway because the feelings in it are very raw and very real.

Let me tell you, it’s nice to have some hope for once.  It feels… nice.  Weird and alien, but nice nonetheless.

My son Sawyer loves music.  It’s the one thing that he seems to derive real pleasure from in life.  He’s got quite sophisticated taste (sophisticated might not be the best word.  Esoteric is probaby a better word).  His favorites change pretty regularly but he loves woman singers with jazzy smokey voices like Nora Jones and Dinah Washington and Ella Fitzgerald, and he adores reggae.  Especially Bob Marley.  I must admit I get a kick out of him singing along to “Get up, Stand up.  Stand up for your rights!”  He also loves Ray of Light by Madonna.  He seems to enjoy Queen and the Eagles, though they aren’t particular favorites of his.  His favorite CD right now is from Kenny Chesney and the first song on the disc is Blue Chair.  I’m not certain that’s the real name of it, but it’s a song about a blue rocking chair sittin’ in the sand, and it’s Sawyer’s go to song of the year.   We listen to it EVERY time we get in the car.  Over and over and over.

Did I mention how much  I LOATHE that damn blue chair now?  …Sigh…

Sawyer gets particular favorites of things and then he seems to get stuck there for a while.  He was stuck on Nora Jones for a long time.  Luckily, I enjoy her music even if it does seem like you are on qualudes after prolonged exposure.  We used to listen to the song Soft Winds by Dinah Washington (which I love) all day long.  I would play him the song off of my itunes account on the computer and I would set it on repeat for him.  It was played something like 600 times.  The second most played song was like 70 so that shows you what we were listening to.  And now it’s Blue Chair.  There seems to be no rhyme or reason, no particular style of music from which he’ll pick his new favorite.  I just hope his next favorite is something I like too.  Because either way, I will soon know it by heart.

He does the same thing with movies.  I might have blogged about this before, but it’s worth mentioning again, I think, that his favorite movie of all time is Spice World.  Yes, the Spice Girls movie.  I have seen this movie more times than any other movie in my entire life.  He watches it, literally, at least once a day.  Every day.  Our entire family knows it by heart.  So does Sawyer’s aide.  So do my children’s friends.  I don’t know why he loves it so much, I just know that he does.  We even have to listen to the credits (which are his favorite part, for some reason) and if we mistakenly turn it off before they are finished there is hell to pay!  His other favorite movie is Cars by Pixar, but Spice World FAR outranks it.  Sometimes, very rarely, he will allow us to substitute Cars for Spice World and those are blessed days indeed.

I actually LIKE Spice World.  It’s a funny, well-written spoofy, farcey kind of thing and all the gals seem like they have good senses of humor.  It was filmed at the height of their fame and it’s got some good music and it’s colorful and fun.  You might ask how this came to be his favorite movie?  Well, someone gave it to my oldest daughter and Sawyer liked it as a child.  Then it broke.  One Christmas, I saw it for like 5 bucks and gave it to Sawyer in his stocking as a filler gift.  And the rest is history.  It has worn out twice and we’ve replaced it both times.  It’s easier just to have it on hand than to NOT if anyone gets what I mean.

We watch it with the captions on and I credit this with helping teach my youngest children how to read.  Who knew it was the movie that kept giving and giving and giving?

When the Spice Girls got back together last year, I considered taking him to a concert.  But they didn’t play anywhere near us and it would either have been glorious or terrible, and it cost too much and was too much trouble to gamble that it would have been the former instead of the latter.

I will have new toons up tomorrow morning!

Tonight, my two youngest kids are off spending the night with their friends.  They were SUPER excited and it was so nice that they got to go off and have fun.  Then I got to thinking about it… Sawyer NEVER gets invited to go anywhere.  Not that he cares, not that he wants to go anywhere, not that he has any friends or cares either way, but I care and it made me sad.  Mostly I don’t dwell on his future or his limitations but sometimes it hits me hard and my avoidance of the subject becomes a full on pity party.

That’s where I am right now.  Want to come?  No?  Then stop reading right now.  Don’t say you weren’t warned.

Unless there is a miracle of some kind, we will never have an empty nest.  When we retire we will still be full-time caregivers.  When we die he will be alone.  These facts are bleak and they are why I mostly don’t choose to think about it.  I get through this day by day.  Thinking years in advance just serves to freak me out.

My son is in a small, sheltered class at his school.  It is the class for the VERY disabled kids.  Every year we buy him a yearbook which he never looks through or has anyone sign.  I have put them aside for him just in case someday he might want them.  Now, logically, I KNOW he will never want them.  It’s just not going to happen.  But every year I continue to buy him a yearbook just like the other kids just in case he someday does.  Why yes, I AM in denial.  Thanks for noticing.

Anyway,  this year when I looked through the yearbook his picture wasn’t with his class.  I couldn’t believe it.  He’s never been left out before and my mind immediately went to all sorts of crazy conspiracy theory places wondering if it was an actual oversight, or if  he’d been purposely left out for some reason.  Finally, I remembered to mention it to his teacher.  She told me that he wasn’t left out, but instead of putting him on the page with his acutal class, for some reason, his picture was put in his actual grade, along with all of the other middle schoolers.

This has never happened before.

I went home, opened the yearbook to his grade, looked him up and… started to cry.  He took a good school picture this year.  We had it retaken and his teacher made the photographer take his picture something like 72 times (literally) until she got one where he didn’t look stoned or retarded or crazy or manic.  The photographer actually had to delete all the pictures because he filled his camera and keep shooting until he got  a good one.  No one has ever taken the time to do this before and I was soooo appreciative!  For once, Sawyer looks handsome and neurotypical in his  school picture, and seeing his sweet little handsome face in the yearbook  surrounded by all of his peers who I don’t even KNOW even though he’s been going to this school since he was in preschool, was kind of overwhelming.  Yes, technically I know what grade he’s in.  But he’s never been mainstreamed.  His peers are complete strangers to me.  I’m sure those kids looked through their yearbook and went, “Who is THAT?”  Or worse, “Isn’t that that really weird kid from the disabled room?”

Sometimes really unexpected things can hit you hard.  When we first found out Sawyer was disabled, I was really resentful of other boys his age.  Not girls, just boys.  I kept thinking that their mom’s were pregnant at the same time I was and how come they got the “normal” kids?  I wanted one too!  As he grew older, that completely went away.  …Or so I thought.  But seeing him on that yearbook page surrounded by all the “normal” kids his age brought all those feelings to the forefront again.  These are feelings I thought I’d dealt with years ago.  Feelings I thought were done with.  Over.  And now I realize that they aren’t gone, not by a long shot.

Apparently, burying feelings and DEALING with them until you are over them are two very different things.  Looks like I’ll need to spend some more time doing the latter.

I am sorry I have not been around this past week.  The kids are home on spring break and my autistic son is having a very bad med reaction.  Again.  We have discontinued this med though, so once it is through his system he should be good to go once again.  I will upload my Easter cartoon tomorrow and start fresh from there.  I am not lying when I say that I have been unable to do much of anything this week except watch my son.

I bought the current People magazine and they have an article in there about a woman who was apparently killed by her severely autistic/extremely aggressive teenage son.  She was a single mom who had spent all of her time taking care of her son over the past few years.  She was lonely and overwhelmed yet she loved her son and obviously worked very hard to keep him out of an institution even when her own safety was compromised (he was over 6 ft tall and over 200 lbs.) and had attacked her before.  She talked about how she couldn’t be a friend to anyone because she physically and emotionally couldn’t be there for them.  Anyway, she didn’t show up to work one day and they police found her beaten and unconscious on her floor.  Her autistic son was downstairs and oblivious.  He was arrested and he fought this because he most likely didn’t understand what was going on.  The mother died a few days later, and the authorities are trying to figure out this boy’s competency for trial.

I cried after reading this article for many reasons.  The first reason is that I KNOW this mother’s worst nightmare just came true.  She has died and her son is facing jail or an institution and so all of her sacrifices to keep him home were in vain.  I’m sure he wonders where she is and wonders why his routines are messed up.  I’m sure he has no real idea what is going on or why he can’t go home… that poor child.  And I say this KNOWING that he most likely beat his mom to death.   He CANNOT be held responsible.  Any sane person should be able to figure that out immediately.

I am kept up at night worrying about what will happen to my own son after our death.  I’ve told God that if I have a vote, I wouldn’t mind dying with my son  and my husband in some kind of traffic accident when we’re in our seventies or eighties.  Yes, that would be horrific for the other kids to lose both parents and a sibling like that, but at least he would be cared for all of his life.  My husband and I know he will be with us forever and we accept that fact.  But I don’t know how I could do this alone.  My son is not a burden.  But… the WORRY over what will happen to him IS a burden we live with daily.

I also feel for this mom because, though I didn’t know her, I feel like I did.  Our lives are quite similar in some ways.  We were both parents to  severely autistic sons, and honestly, we are not a huge group.  95% of autistic kids I see are LIGHTYEARS ahead of my son in functioning.  It’s hard to believe that my son and those kids both fall under the same disorder.  I have found that people with higher functioning kids tend to think that autism is not THAT bad.  Oh yes, it can be challenging, but overall, with some therapy and some life changes, it’s managable.  But folks who have children on the LOWER end of functioning see things quite differently indeed.  Every day is a challenge.  Every minute.  Every second on some days.  You must be on CONSTANT alert, even when you are asleep.  Keeping that child safe or property or other people becomes your only priorities.  It’s stressful and difficult AND you are not rewarded for it in any real way.  Your autistic child doesn’t give much back in the way of feedback and other people tend to wonder out loud why you just don’t “Put him in a home and be done with it.”  As if putting your baby in an institution where there is a very REAL possibility of abuse is an easy decision.  I always say, “Could you put YOUR child in an institution?  It ain’t so easy…”

Our lives are crazy.  I realize that.  My other children don’t yet realize that, but hopefully, once they have their own children (who will hopefully be neurotypical) they will see that it’s possible to go to the movies as a family.  And to restaurants.  And on vacations.  And that you won’t have to leave early or apologize to other patrons or get in an argument with rude folks who are just not going to understand they dynamics of your family.

My life is different from this woman’s in one important way though.  I have a husband by my side helping to parent and taking some of the enormous pressure off of me.  One of us is always available to go to the other kids’ games and plays and concerts.  We manage to go to church and to have some semblence of lives because we have each other and I am grateful for that.  Soooo many marriages fall apart when there is an extremely disabled child in the mix, and that means that there are a lot of single parents who are really facing some hardships.

I don’t know what my point really is except that I hope folks in the community will start to seek out these families and see what they can do to help out.  I know how alone they feel.  I know how difficult it can be to face another day, another week, a LIFETIME with no breaks.  Don’t offer to watch the child because the parents are not going to let you do it.  They will (rightly) feel that you will NOT be able to handle the child, no matter your good intentions or skill level.  No, instead I’d like to encourage people to befriend these folks.  Bring over a meal.  Provide some company.  Invite them places at times when they can go.  When the child is at school, or during respite breaks.   Be comfortable around them even if their child goes off in a tantrum.  Keep talking to them on the phone (if they seem like they want to keep talking) even if you can barely understand them over the screaming in the background.  Conversely, don’t be offended if they have to suddenly get off the phone and can’t call you back for hours. Don’t let yourself get freaked out.  These kids are JUST kids, even if they look and or act quite different from your own.  That is one reason why I love my friends so much, Kate in particular.  She is NOT freaked out by my son, nor does she judge us and these are just HUGE blessings.

I just know there are parents out there struggling with what seems like a hopeless situation who are so very lonely.

… I just wanted to make people aware of that fact.

Have you ever been so tired that you are having hallucinations?  I am not there right now, but I have been there before.  Once, I was trying to finish a project and I was working round the clock for a few weeks in a row (getting only about 2 hours of sleep a night) and I began seeing things.  I would see black paint running down the walls.  The walls would warp in and out.  I would catch movement out of the sides of my eyes, but when I’d turn around there’d be nothing there.  This really freaked me out.  I thought maybe I was going crazy or we were in the middle of a haunting, and then I got some sleep and these things stopped.  Coincidence?  I don’t think so!

Right now, I think I’m on the verge of something similar.  I need to start being kinder to my body and soul.   Suffice it to say that living with our autistic son is hard these days (he’s going through puberty and this is hard on neurotypical kids so you can imagine how much harder it is for him.  Not a whole lot of sleeping or, you know, SANITY going on in my house lately.  Enough said…)  I really need to get more sleep and have less stress.  Make a pill that does that and I guarantee you’ll be a billionaire.  Sigh… 

It’s almost 11 here.  My cartoons are written and drawn up but not inked yet.  They have not been scanned.  If I do those things I will be here until after 1 am easily.  I am exhausted so I am going to go to bed.  Tomorrow I will TRY to catch up on my cartoons, my emails and this blog, but I make no promises about it. (Well, I do promise to post new toons tomorrow no matter what).   Tomorrow is saturday and the only way I’ll get the res tof this done is if my son has  a good day.   Add in a bad day and all bets are off. 

Tomorrow is the 20th.  The last toon I posted was the 16th.  Tomorrow night I’ll try to post the 17th, 18th, 19th and 20th dailies.  Then sunday night  I’ll post the Sunday the 21st toon and the Monday the 22nd toon and then I’ll be caught up!  Yippee skippey!  That means a lot less work for me throughout the holidays, which is always nice.

Wish me luck!

Today’s cartoon was lifted almost exactly from my life.  It was long (hence the three tiers of toon) and it took me a LONG time to color because I lost all of my color files from my old computer.  That’s also why the characters look a little off.  They are not their real colors because I never thought to write them down!  I will get that stuff back and be back to normal soon.  Because this cartoon took me so long to scan and color, I didn’t post any other cartoons tonight.  I skipped the 11/29 daily and will post it tomorrow with the 12/1 and 12/2 toons. 

Back to today’s toon.  I hope it makes sense to people.  We were standing in line for Santa and my husband took three of our kids over to get free popcorn and hotdogs that were being given out.  I stayed in line with our autistic son (who wouldn’t eat either thing if his life depended on it).  While we were there he was jumping on my back and laughing and I was laughing because he was so excited.  Normal stuff for us, but not really normal considering that he’s a tall, normal looking teenager.  Anyway, this woman dresses as an elf comes along and starts asking all the kids in line (or the parents if the kids were too tiny) the kids names and what they wanted from Santa.  I don’t know what this was for, but I assume it was to help make the line move faster by giving the big guy some info right off the top (this is Maggie and she wants a Barbie.  Smile!) The elf is making a point of asking every family and then she comes to us, and I’m about to tell her my child’s name and tell her that the other kids would be back momentarily when her eyes glazed over.  She pretended we didn’t exist, walked right past us and asked the people behind me in line about THEIR children.

I almost cried!  Obviously, my son was freaking her out.  Yes, he was a bit old for Santa but he LOVES Santa Claus and we go every year and he knows what to do and if I want to take my disabled son to see Santa that’s none of her business.  I didn’t say anything to her, I just let her get away with this, but then I went home and stewed about it.  My best friend and I decided that it really needed to be a cartoon, so here it is.  I don’t know if it’s any good or not, but it sure made me feel better.

I wish, again, that I was as assertive as Eve.  Maybe someday it will rub off on me.

I keep having the oddest experience.  I will be somewhere and I will see a child who seems totally fine.  They are chatting with their mothers, they are playing with other kids, they bring their moms flowers they picked for them, they are pointing… they don’t present as autistic at ALL to me.  And then the mother will tell me that her child is autistic.  (I actually wrote a Sunday strip about this that will run sometime in the next month).

I never argue with the parents even though, inside, I am always thinking, “Excuse me, but how is THAT autism?!”  Usually, when I say that I also have an autistic child they are excited to speak with me.  Until they meet my son (who is severely disabled).  Then, it’s quite a different story.  Their reactions have run the gamut from being completely freaked out and worried that their child might be headed in that direction, to insisting that MY son doesn’t have autism at all because, as you can see by little Henry here, autism is a much different animal than that.  Um… no.  Unfortunately, MY son is the one presenting with classic autism and yours is the one who isn’t.

My goodness, you might be thinking, it’s not a competition!  Can’t they BOTH be autistic?  And the answer to that is, of course they can.  The autism spectrum is an extremely broad one, and the kids on one end will present nothing like the kids on the other end.  It used to be that you had your Aspergers on one end (who are your high functioning brilliant but awkward kids) who never had a speech delay but have a very hard time with social skills and cues.  These are kids who go on to have jobs and friends and families, and who are able to support themselves as adults.  In the middle were your moderate to high functioning autistic kids.  At the other end were your severely autistic kids.  The kids who rock.  Who don’t speak.  Who are self-injurous and have horrible behavior problems.  Who make no eye contact and bang their heads.  These are  the kids who end up in institutions because their parents cannot handle them.  These are the kids who will require constant care for their entire life.  And that, my dears, is QUITE a broad spectrum indeed.

But tonight, my best friend told me that now they have added sensory integration disorder to the autism spectrum and they are thinking of adding ADHD to it too.  That would move Aspie kids more to the middle of what would then be an ENORMOUS spectrum.  Kate made a very good point.  The problem with this is that when you label everybody as autistic, then suddenly no one is.  And some people really ARE and they need help that they won’t get if everyone and their mother can suddenly qualify for a slice of the limited autism resource pie.

I guess I don’t understand why the medical community is suddenly ready to throw everyone who is the slightest bit quirky an autism diagnosis.  Can’t you just be quirky?  I remember when every kid suddenly had ADD or ADHD, and now it seems like every other kid has autism.  But now if ADHD really is added to the autism spectrum… Oh boy.  The sky’s the LIMIT on where this thing could end up.

There really is an autism epidemic going on, but in my opinion, it’s being masked and watered down by the plethora of kids who are being misdiagnosed with autism.  I worry that this is going to cause autism to start flying underneath people’s radar’s again.  Something is causing the very real and rapid increase of this disorder, but if the public starts viewing autism as mild, easily treatable and slightly irritating only, then kids who are at the lower end of the spectrum will really suffer. 

Speaking as the mother of one of those kids… this breaks my heart.

I was talking to a speech therapist about a month ago and we had a very interesting conversation about autism.  She’s been a speech therapist in the school system since the seventies, and when she started out there were no autistic children in the entire school.  None in the entire district.  In fact, the first autistic child she helped was in 1991.  She said she figured he would be the “one in her whole career.”  She didn’t know much about how to help or teach this boy because there were only a few paragraphs in one book she could find on the subject, but she did her best. 

The next year, she got another one.  By 1995 she had four autistic patients.  There were only about 400 children in the school at the time, and she just thought this was an enormous amount of autistic kids to have in one tiny school.  She started to worry that maybe our community was an autism hot spot.  Sort of like how there are cancer hot spots that sometimes pop up in communities.  She was so worried about it that she wrote a letter to some man at Yale University (I cannot remember this man’s name) explaining it to him and asking for his opinion.

He wrote her back and said that it wasn’t just our community.  That they were seeing a 5 to 1 rise in autism throughout the entire country, and they didn’t know why.  This was back in 1995.  I get chills when I think about this because my own autistic son was born in 1995, and I had NO idea this was going on.  Autism wasn’t on my radar at all.  In fact, the only time I’d ever even heard the word autism was on a public service announcement that used to run on TV, where Sylvester Stallone talked about his autistic son being stuck in his own little world and asking for funding for a cure.  (When my son was first diagnosed, Sylvester Stallone was the person I thought about.  I bet not many people can make THAT claim…)

When my son was about 20 months old, he pulled a bookcase over on top of himself.  While we were at the emergency room, the doctor was VERY excited to find out that my son most likely had autism (at that time everyone told me he had it, but that he couldn’t possibly get a real diagnosis until he was 3.  Oh, how things have changed…).  This doctor asked if I would mind if he brought in medical students to see him.  I said it was okay, so he brought in about 5 students and started telling them about autism and about how they might not ever meet another child with it, so you know, get a good look. 

Fast forward 13 years, and I cannot IMAGINE this conversation happening today.  I heard that one in every 150 children born in the United States has autism.  But if you just count boys, the figure is now 1 in every 99 boys born.  The autism rate used to be 1 in every 10,000 children born.

What the hell is happening, and WHY is there not wide-spread panic in the streets?  Autistic kids are everywhere these days.  Everywhere.  And yes, some of them are misdiagnosed but the majority are not.  This is not simply a case of better diagnosis’.  Otherwise, the school system from 20 years ago would have been overrun with quirky kids who had a hard time getting along with others and who didn’t talk much.  And we know this wasn’t the case.  Something is going on.  Something has changed in one generation.  It could be pollution, hormones in our food, it could be ultrasounds.  It could be vaccinations (my personal belief).  The point is, something is triggering this and we need to find out what it is.

To bring this around to the topic of CBW, Seth has autism in the strip mainly because I wanted to raise awareness.  I also wanted to show that raising an autistic child doesn’t have to be all grim all the time.  Making Seth autistic was a hard decision to make, but I have not regretted doing it.  The Torres’ are far from alone in what they are experiencing.  Judging from the mail I receive about autism, it seems just about everyone either knows someone with autism, or has an autistic person in their family.  Treatments for autism aren’t cheap, and they aren’t paid for by insurance. 

For example, my friend has a child in a wheelchair.  Insurance pays for whatever he needs, no questions asked.  She also has an autistic child, and he can’t get services from insurance because he has a developmental disability that isn’t expected to get better, so too bad, so sad.  Next!  I did a cartoon about this once, long ago.  Here it is.  I’ll end on this note, as I think it sums up my feelings pretty well.

5/5/05

5/5/05

Is Clear Blue Water based on your family’s real life? 

The answer is yes and no.  Certainly there are similarities.  We have the same ethnicity and political leanings as the Torres family, and we both have five children, (including an autistic child).  But, everyone in my family is older by a few years than their Torres counterpart, and the birth order of the kids is different as well.

They are a fictional family with fictional problems and storylines that usually bear very little witness, if ANY, to what’s going on in my own life at the time.  I might draw on my life and my past to write for Manny and Eve, but I consider my children’s lives to be off limits.  I don’t (except on the rarest of occasions, and with their full permission) pull specifics out of their lives to use as fodder for the strip.  I will draw on themes though.  If one of the kids has a problem with bullying, I might, years later, write some strips about a bully.  The strips would be about a fictional situation whose course and resoulution would be different from what really happened in our life.

Take the autism storyline.  Seth is based loosely on my son, but their stories are very different.  Seth has received much better early intervention and services than my son received when he was young, and consequently he has a better long-term prognosis than my son.  But, like my son, Seth will never recover.  I just refuse to write it.  Seth’s story drew from our story, but it also drew from my best friend’s story with her autistic son, and from things I’d read and heard about…  This works for us.

Eve is not me.  We both are liberals, we both have curly hair and big mouths, and we both get exasperated with our husbands.  But I am nowhere NEAR as outspoken as she is.  She says things I only wish I had the guts to say to someone’s face.  Not that I can’t go there, but I have to get pretty darn mad and be pushed pretty far before I will explode.  Her boiling point is way lower than my own.  She’s also quippier than I am.  Manny and my husband are also different.  One time I asked him what he though was their greatest difference, and he deadpanned, “Well, he’s a CARTOON character.”  ‘Nuff said.

I’ll end with one of my favorite stories of all time.  It comes from the folks at Sesame Street.  I hope it’s true, as I’ve loved it for years.  As the story goes, someone wrote in to them demanding to know if Ernie and Bert were a gay couple living together, and why would they choose to show this on a children’s program and blah blah blah.  This was their response.  “Ernie and Bert are not gay.  They are puppets, not humans.” 

Brilliant.

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