Growing up Ginger

When I was ten years-old my greatest fear was that my hair would turn pink when I got old.  It never occurred to me that women dyed their hair that color . . . on purpose!  I assumed that I was genetically predetermined to have pink hair when I was old and I hated pink!  I wasn’t sure what had happened to the women with light blue hair.  I think I worried about having pink hair for two years before I confided my fears to someone who assured me that it wasn’t a natural color and probably endemic to Idaho.

I like having red hair.  Although, when I was young I was teased for it.  My mom told me I came home crying one day that “they called me tomato head!”  I don’t remember it.  It was probably so traumatic that I blocked it out.  Perhaps if I went to counseling I could remember it.

When I started Junior High people started complementing me on my hair color.  Which I liked.  What I didn’t like were the accompanying freckles.  I have found in my vast experience that the only people who like freckles are the non-spotted people.  I remember it was agonizing not to be able to tan in the 80s.  Since it was before skin cancer, everyone was a sun worshipper then.  And I did not tan.  I reddened and freckled.  When I was sixteen I had the brilliant idea that if I got enough freckles they would blend together and I would look tan.  That was not my brightest moment.  I seriously have to repeat that statement.  THIS WILL NOT WORK!  And if anyone is tempted to try it I can assure you that this will result in massive freckling.  You won’t look remotely tan.  You will end up looking like a fool who spend the summer trying to get spots everywhere!  It’s better to stay blindingly white.  Because you will spend the next three years wearing a burka while your freckles fade.

But there is a dark side to red hair.  Yes, that would be the blond eyelashes and eyebrows.  Unless I wear makeup I don’t look like I have any.  And worse yet, there is no guarantee that your children will have red hair.  I only have one out of four.  My brother has zero out of three.  Two of my sisters however, brunettes mind you, have a lot with red hair.  It’s as if they were jealous and stole the red hair from me and my brother.  One of them has two with red hair and the other has about five.  Honestly, I don’t know how my brother deals with it.  I would have switched one of my kids for a redheaded one.

Will is on to me!

He has found all my hiding places for gluten filled foods.  I found him eating Lucky Charms off the floor in the bathroom.  I had locks on the cupboards and that worked for a while, but then he started unlocking the cupboards, taking out the food and then relocking them.  I figured out what he was doing when I heard the locking mechanism and went in the kitchen only to see the whole thing!  I gave up on the locks as they were ineffective and went back to my default of hiding food.  But since he is too smart for his own good, hiding stuff is pretty difficult.

I bought some magnetic cabinet locks so we’ll see how long those last.  I don’t think he reads my blog; so, hopefully he won’t figure it out for a while!

Why I love William Shatner now that he’s no longer on Star Trek

I disliked the original Star Trek.  My brother used to watch it on Saturdays and I thought he watched it just to bug me!  Now twenty five years later I think he probably liked it and it had nothing to do with me.  But William Shatner embraces the campy and honestly in some (admittedly kind of sick) way is kind of sexy, campy.  I’m not saying I’m attracted to him.  But if I am being honest I love the way he reads poetry and I wouldn’t turn down a personal reading although I’d bring my husband along to enjoy it with me.

So, here’s one reason I love William Shatner:

And here’s another:

Skip to 1 minute to hear Shatner.



He's a Rocket Man:



You're welcome!

Bridging the Gulf

“It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences.” Audre Lorde

The autism community is divided and angry.  One major division is between those who want to cure their child and those who support neurodiversity, those who believe there is nothing to cure.  There is a gulf between those who believe vaccines trigger autism in a genetically susceptible child and those who don’t. 

A friend, who has adopted two children, told me that a social worker prior to the adoption told her, “Through the years, you will bond with your child, love your child, and help her to grow and mature. Along that journey, you will encounter times that your daughter has challenges both big and small, and you will try to help her to ease the pain. When you see that she has a hole or a void in her life, your natural instinct will be to help her to fill it or learn to deal with it if ‘filling’ isn't possible. The desire to find one's birth family is often an aching void, and you will you likely will transition from the vulnerability that you predict you will feel, to finding yourself wanting to scour the planet helping your daughter to find her birth family."

Both groups see the challenges our children face and the voids or holes in their understanding and abilities. But we disagree about how to best fill them.  And that disagreement is often stridently voiced as if there is only one correct way to proceed and believe.

Over the past year I’ve started to occasionally read some neurodiversity and “science based” blogs.  Much of what I’ve read is self-congratulatory, my side is right and only an idiot could think differently posts – though usually put much harsher than that.  To be accurate, the recovery side is filled with a fair amount of vitriol as well.

I read in those blogs that I am stupid, that I’m desperate.  I read that if I use bio-medical approaches to cure my son that I don’t accept or value him and I am deeply and morally offended at that supposition. 

And they read in our blogs that they are lazy, that they are selfish, and that because we fight harder we love our children more and they are deeply and morally offended at our suppositions.

This leaves the autism community offended, divided and fighting . . . but against each other rather than fighting for our children.  I’m so tired of the dismissive language.  I feel as if I’m in the middle of a vicious cycle where one side calls the other desperate and delusional and the other responds in kind.  No group can honestly claim to stand on the high moral ground in this fight and it’s laughable when they try.

Individuals with autism have benefited from both groups.  Regardless of one’s position on vaccines being a trigger for autism, no one should argue against greater attention being directed towards studying the safety of vaccines.  And for many individuals biomedical approaches have alleviated painful symptoms and have led to a greater ability to interact with society.   Regardless of one’s position on neurodiversity, we all want greater societal acceptance and inclusion of individuals with disabilities.  And there are insights we can gain from listening to individuals with ASD even if we disagree with their position on neurodiversity.

Many proponents of neurodiversity support therapy and intervention for their children some do not.  But to brush them all with the same brush is the equivalent of their claim that we are all anti-vaccine when many of us clearly state that we are pro-safe vaccines and support vaccinating children on a limited schedule.  And to state the obvious -- anyone who believes that vaccines triggered autism in their child saw enough value in them to vaccinate.  

Some people with Aspergers support neurodiversity and we should listen to them and learn from them.  But they must accept that they cannot speak for our severely autistic children.  Their voices should not dominate the discussion because our children do not have one.

There have been huge gains in autism awareness and research studying it during the past few years; unfortunately, due in a large part to the ever increasing numbers of kids diagnosed with it.  But part of it is due to the advocacy of many individuals.  Can you imagine what the autism community could do if we redirected the energy we spend fighting with each other towards working together?  There is common ground.  We all want greater societal acceptance and inclusion.  We want accommodations in the workplace for both higher and lower functioning individuals.  And we all want to find more effective ways to teach our children. 

The hostility that has dominated our interactions has come at a high cost.  And the cost is borne by our children.  Both sides continue to harden their positions using increasingly bitter and divisive language and the gap widens.  Reasonable, intelligent and educated people can hold different opinions -- especially in science. 

 

Those who assert that SCIENCE has definitively answered the question “Do vaccines trigger autism” in the negative are dogmatic and no doubt the harshness with which they skewer us contributes to our unwillingness to trust or listen to them.  And in doing so, not only do they ignore the history of science but they also betray what I consider the best part of neurodiversity, the call for respect of differences.  I cannot believe that neurological wiring should be the only difference to be tolerated.  The respect and tolerance they call for should be accompanied by a tolerance for differences in opinion.  

Many of the blogs on both sides of the debate seem to be shrill, self-important mouthpieces for rigidly held beliefs.  Followers chime in and if anyone dares to disagree, the followers pounce with outrage.  Then they follow up with self-righteous diatribes on their own blog.  With embarrassment I admit that I am guilty of that myself. 

 

We must end the war within our community.  But to end it someone must go first.  I do not suggest that we abandon our beliefs or our attempts to recover our children.  But this war has diverted voices.  Rather than speaking for the community we are arguing with each other.  We should disengage from the dogmatic and thoughtless blogs. Let’s call for the tolerance they want extended to individuals with neurodiverse wiring to be extended to those with different positions than their own.  Let’s continue to comment on-line and in the media our position but let’s do it differently.

When we meet vitriol with vitriol and disrespect with disrespect we dilute our power to advocate for our children.  And this time I say it to us -- reasonable, intelligent and educated people can hold different opinions -- especially in science.  We must start at this point and move beyond our differences for the greater good of all our children because there are holes in our children that we are not filling.

Desperate, huh?

One of the favorite words in the toolkit of anti-bio-medical proponents is “desperate.”  The image of a woman running in circles, wringing her hand and crying in desperation comes to mind; how quietly effective.  With one word you can set yourself up as a separate, logical being unconfused by emotion while relegating those you disagree with to a useless, emotionally clouded, dithering position.  And best yet, you’ve put us on the defensive.  Bravo!  While we’re busy being offended you are trying to make us irrelevant.

Someone called me once to talk about moving to Massachusetts for services for her autistic son.  Her husband was from Massachusetts and they had family here.  I, thinking of the services available in Idaho verses services available in Massachusetts, assumed there was nothing to think about.  Of course, they would move here.  However, the cost of living differential involved a lot of sacrifice and they didn’t move back.  I relayed the conversation to my husband.  He didn’t understand why they wouldn’t move here any better than I did.

We have sacrificed quite a bit to remain here.  It’s expensive to live in Massachusetts.  Eight years ago when the economy started to dip, my husband switched roles to remain employed.  Almost everyone else in his department was laid off.  His new position required Monday through Friday travel, which he did for several years.  And our family of six was crammed in a tiny (albeit charming) house built in the 1920s (sans closets) on the wrong side of the tracks.  It was a difficult couple of years.  

Money is an easy sacrifice.  Few people value money more than their child.  My husband’s sacrifice of time spent away from us was harder to make, but the progress our children made was worth it.  So, I’m hard pressed to understand why other people aren’t willing to make the same kinds of sacrifices.

Should I put those who don’t try bio-medical treatments in that same category?  Is it selfish to begrudge the money?  Or is it more hurtful to try and fail than to never try?  Are we desperate and you selfish?  That assertion is a little bit offensive isn’t it?  I honestly don’t believe that people who don’t try bio-medical approaches are selfish any more than I believe that parents who try biomedical approaches are desperate.  I think it’s shortsighted not to try biomedical interventions but I respect that parents are all in different places: emotionally, financially and scientifically.  

I have little expectation of changing rigidly held beliefs but I wanted to let the neurodiversity movement know that calling me desperate doesn’t leave me sputtering with outrage.  I see it for what it is.  The label “desperate” is a smug attempt to set yourself up as an authority.  It’s an attempt to pigeonhole people you do not agree with.  And perhaps for some, it is a rationalization for not trying biomedical interventions or the result of being disappointed from lack of improvement.  I don’t believe that an unwillingness to try bio-medical interventions is selfish.  So, I will not call those who don’t try selfish – but I could and be as accurate as you are when you call me desperate. 

I’ve read the “desperate” argument frequently in the media and online.  While at first it offended me, and I felt belittled parents and their observations; it never struck a cord.  I never felt desperate about Will’s recovery.  I knew a window existed, during which more progress could be made but our decisions have always been for Will’s benefit.  We put Will on the GFCF diet because of allergy testing.  Improved sleeping, awareness, decreased stimming, increased interaction with others, mastery of programs, and weight gain resulted; with the additional benefit of the loss of allergy symptoms such as eczema, red cheeks, tongue sucking and eliminating his abdominal pain.  Treating chronic diarrhea also has resulted in eliminating behaviors attributed to Will’s diagnosis of autism but clearly resulted from biological issues rather than behavioral issues.  Once we observed that treating Will’s biological issues increased his functioning and interaction with the world we were eager to try more.

Will didn’t talk until he was 7.  He wouldn’t have talked without bio-medical treatment.  Because he can talk he interacts with more of the world.  His teachers have a better understanding of what he knows.  And most importantly he is safer.

Are members of the autism community stuck in a vicious circle where one side calls the other selfish in reaction to the others side’s label of desperate, but this side is really just reacting to being called something else?  I hope not.  The medical profession and media are often dismissive of those who challenge them but shouldn’t those of us who are directly affected by autism give each other the benefit of the doubt rather than unthinkingly dismissing those with whom we disagree?

I understand that not every decision a family makes can be for the benefit of one member even if their needs are more significant.  People can only do what they are capable of.  We all fall short of ideal.  The question is – can you see that hope, determination, and sacrifice does not equal desperation?  If you can’t … well, perhaps that doesn’t have anything to do with me.

I wrote this several months ago, long enough ago that I’ve now written something else quite similar,  Bridging the Gap.  I thought I’d post this one first then post the next in my "series” tomorrow.  I find my evolution of thought (aka: whatever sets me off that particular day) interesting.  At this point – several months later --  I think the label desperate has more to do with the person who is labeling than the person being labeled.

Eating My Words

I’ve blamed Will for weeks.  I thought he threw a bottle of vanilla, a container of brown sugar and powdered sugar away because they’ve been missing for about a month.  This isn’t as crazy as it sounds because he throws a lot of stuff away that really isn’t garbage.  He’s probably thrown ten spoons away.  I’ve found dishes in the garbage . . .  clothes, whatever he decides belongs there.  So, when I couldn’t find my stuff I naturally blamed William.

It wasn’t him.  I had my kids clean out our lazy Susan.  They found quite a bit of stuff that had fallen behind and under.  We actually found jello, and stuffing that belonged to the previous owner.  Yuck! 

Date Night

We went to Jake’s scout fundraiser on Saturday night.  It was a tag sale and auction.  We ended up with a craft tool set, a coupon for a “wicked-good” hairdo (I figure Bri needs one for her 8^th grade dinner and dance), a brand new Lands End coat for $30 (thank you very much – I can’t believe that no one bid me up), 90 minutes of face painting, 90 minutes of balloon tying, a brake replacement, a photography sitting, a Thai food cooking lesson in our house, ski goggles ($2) and a PackMan game thing (also $2).  We pretty much scored.  

Jake’s two big disappointments of the night were that I was outbid on the “go to a video game designer company get a tour and play games that haven’t even come out with three friends” and that I didn’t buy a console TV from the 80s.  

“Mom, you could put that in your room.”  He said.  “Then you wouldn’t have to watch TV downstairs.  You could just watch until you were tired then turn it off and . . .,” he pantomimed fall asleep.  I told him that if I wanted a TV in my room I’d have one.  “Mom, I’m begging you!”  He pleaded.  Surprisingly it didn’t sell.  And at the end of the night Jake pleaded for it again.  But I hardened my heart and refused.