that you wish comes over 0932

As I write this Will is listening to Blue’s Clues in Spanish on the computer and laughing.  Why?  I don’t know, maybe listening in a foreign language makes it better.  The kids’ computer has slowly been usurped by Will.  We caught him rewriting the names of songs on Windows Media Player.  James Blunt’s song You’re Beautiful has been renamed that you wish comes over 0932.  I don’t know why, but I don’t dare change it back.  When I walked over to check he pointed to the corner of the screen.  “X, please.”  And when I didn’t immediately leave he added a “move please.”  Just in case it wasn’t already perfectly clear I was disturbing him.

(Actually the real reason I don't change the names of the songs back is the same reason I keep the phone numbers he makes up in my phone -- because I think it's adorable.)

My Rebel

Brianne is partially a punk.  Not always, and certainly not on the same level of other thirteen year-olds; but she has a streak running through her.  I went in her bedroom the other morning to make sure she was up, when I saw a portable DVD player partially hidden under her pillow.  “Ah ha,” I thought, “I caught her!  I wonder what she is staying up late watching that she doesn’t want me to know about?”

Planet Earth … yes, once I thought about it, it should have been obvious. 

As Seen on TV

This morning while getting the kids ready for their buses, I knelt on the stairs while going through papers from Lizzy’s backpack.  She said, “Mom, you have lines on your feet.  On TV, there is something that will get rid of those lines.  Do you want some?” 

The obvious answer: “No, I prefer the lines because my feet come in handy for woodworking projects.”

Books

I recently read a few books that I enjoyed.  I read Unaccustomed Earth by Jhumpa Lahir.  I liked the Namesake, so I snatched this book up when I saw it at the library.  It didn’t disappoint.  It was beautifully written, some of the stories achingly so.  My sister-in-law recommended The Guernsey Literary and Potato Peel Pie Society it was pretty good.  She also recommended Recovering Charles.  I haven’t finished it yet but I’ve enjoyed it so far.  Bri bought The Hunger Games by Suzanne Collins at her school’s book fair and I LOVED it!  We’re waiting for the next book in the trilogy, Catching Fire, to arrive at our library.  And I just started Nexus Point.

I’m open to other recommendations.

Tunes

Check out Owl City:  I like Hello Seattle and Fireflies (Even though it's always on the radio now.)  Bri and I sing it each other.  I'll admit she knows the words better than me.

Middle School Plays

Jake was just in Grease at his Middle School.  They changed some things in the play but some of it was still cringe worthy; because the kids performing it were 12 though 14 years-old and it just seemed a little wrong.  Of course, I never liked the movie anyway.  I think I was probably one of the three kids in my school who didn’t like it – the other two were probably boys who protested being forced to watch a “girl” movie.  It’s not that I didn’t like Olivia Newton-John.  I did.  I think she was pretty and sang well.  And it’s not because I have highbrow tastes.  I loved Xanadu.  Yes, I mean the roller skating movie about Greek mythology!  I’ll admit I really liked it.  Wow, I’m a little embarrassed about that now, but I was probably only 10 when it came out and I loved mythology and roller skating.  And really, what could possibly be better than combining those two completely non-related things?   And now that I’m thinking about roller skating.  Did anyone else see the movie or TV show about an African-American woman with a fierce afro and a “do not mess with me because I will hurt you” attitude?  After robbing a bank she pressed a button on her shoes and wheels popped out and she skated away.  It was awesome!  I really wanted some shoes like that.  All we have now are heelys, but I think they are ugly. I remember some hot roller skating clogs from the 70s that were amazing and trendy.  Frankly, compared to them heelys lose.  I would buy the clogs and wear them even if I felt like a fool in them.  And bonus:  Will couldn’t outrun me!

Update on My Plan for World Domination

I already detailed my plan for world domination here.  Except for chocolate, my plan is falling into place.  However, I fear, I may not have the stomach for it.  I took the kids and their friend Dave skiing on Saturday night.  Lizzy and Bri, with the benefit of four lessons, “flew” down the hill like the little speed demons they are.  I banned them from the jumps after seeing another kid wipeout.  They weren’t happy with me -- but life is tough sometimes.

Jake, who has only had one lesson because he was in a school play (he was a jock in Grease – typecasting you know), practiced on the bunny hill.  Ironically, he mixed up his skis with another kid who had an identical pair and skied better.  I think I better take his skis back to get adjusted.

I ran into a Special Olympic team there and I might hook Will up with them.  Will and Pete on a team, wouldn’t that be fun!  However, if Will on skis is anything like my girls I might have heart failure.  Because they are fearless and like speed!

Changing the World

A couple of days ago my husband handed me a book and said I should read it because he wanted to talk about it.  I read it.  He's in Chicago so we haven't talked about it yet but the book could change my life -- if I let it.  I read The Life You Can Save:  Acting Now To Change World Poverty by Peter Singer.  Here is the website.

Even with the responsibility of saving for Will's future, even though we give a tithe to our church, even though we live in an expensive state, even though we donate to other causes, even though we have four children and college to save for; we could give more.  We've been interested in micro-finance for years.  We went to a conference while my husband was in grad school and we were hooked by the concept.  Just before Christmas I went to a church food bank and spent several hours bagging fruits and vegetables and loved it.  It's amazing how good I feel when I serve others but I forget.  I get consumed with my own life and busy watching crappy TV and wasting time online.

I feel an obligation to people throughout the world.  I feel linked to them by our shared humanity but the overwhelming need and numbers paralyzes me.  What little I do is a drop in an unfilled bucket.  I should no longer ignore the fact that just because I cannot fill the bucket doesn't relieve me of the obligation to add my drops.

I invite everyone to add a drop.  Maybe if we do it together we'll inspire others to start.  But even if I, or we, don't inspire anyone else I still feel a desire mixed with obligation to help.  On this link, you can calculate how much you should give.  The number might surprise you.

Expecting

At Will’s special needs MyGym class there are three women who are pregnant.  I talked to the husband of one of women on Monday.  I congratulated him and asked him how he felt.  He felt anxious and fearful.  It brought back memories from when I was pregnant with Lizzy.  I gave him the advice I wished I had gotten eight years ago.  Don’t give in to the fear.  Try to enjoy it.  Babies are special.  You do everything you can to keep your child safe and try not to freak out.

In my case, I gave my husband very specific instructions.  He was to follow the baby regardless of what was going on with me and make sure she didn’t receive a Hepatitis B shot.

Civic Stuff

Our new school superintendent proposed reconfiguring our K-5 elementary schools to K-2/3-5 last week.  I'm trying to stop that.  I'm starting a new career as a rabble-rouser (AKA: a community organizer).  

Yes dad, and so it begins. 

GFCF Diet

The gluten free/casein free diet literally changed Will’s life for the better. If I had not seen the difference in Will with my own eyes I would have never believed that diet can have such a large effect! We heard about the gfcf diet a year before we tried it. We thought it was silly. But after Will turned down candy to suck on a piece of whole wheat bread we knew we needed to investigate potential allergies and sensitivities. We did an IgG test and he came up allergic to gluten and casein among other things. We removed them from his diet. Fortunately, we tested him before we started because nothing changed for two months and I would have stopped the diet if we didn’t have the test results.

Before starting the diet Will was skinny, had eczema, red cheeks, dark circles and genital itch. He constantly circled, jumped and stimmed. He stimmed with his fingers in his peripheral vision. He constantly sucked his tongue or bottom lip. He carried a crumb in the bent first finger of both hands and used the remaining fingers to eat, etc. He went to bed at 11:00 at the earliest and woke up at 3:30am. He had night laughter and developed chronic diarrhea. He wanted to watch TV all the time and disturbingly had just started trying to watch TV upside down. But his worst symptom was the constant keening in pain. Unfortunately, because he was non-verbal I didn’t know he was in pain. He watched TV all day and that was the only time he didn’t keen. I don’t know how to describe the sound. It wasn’t a scream just a constant high pitched “e” sound. He made his high-pitched pain noise for a year and tried to distract himself by watching TV. I tried playing with him to stop the noise but nothing I did stopped it. I gave up and let him watch TV to stop the sound. He would happily sit in his high chair for hours sucking on a piece of bread. He was in a constant haze. His therapist said he went to a “happy place.”

Will had started ABA before he was two and before he was even formally diagnosed. He didn’t maintain any skills. He was severely impaired. He had 26 hours a week of ABA for nine months without making any progress plus a weekly visit with a child educator and SLP.

After the first two months, overnight Will became a different child. He started sleeping until 7:00am rather than waking up at 3:30am. He stopped jumping, toe walking, and circling. He stopped constantly watching TV. His stimming decreased by two thirds. He stopped sucking his tongue and lip. He stopped touching his penis. He stopped keening. His peripheral vision stims disappeared. He wasn’t hazy anymore he was available. He started mastering and maintaining knowledge. He started making developmental gains. He had three ABA therapists, an early childhood educator, and a SLP. We all agreed that the diet had caused this tremendous change. In fact, the BCBA still uses Will as an example that the diet is very effective for some children.

The effectiveness of the diet was reinforced when Will ate wheat, because he would wake up at 3:30 (and still does) and his stims increased. He gets red cheeks from casein. A couple years after being on the diet his pediatric gastroenterologist recommended we test Will for celiac; we put Will back on gluten and casein. For two months he didn’t have many symptoms and I thought he had outgrown his allergy. I was willing to over look some symptoms for increased quality of life. Unfortunately, after two months he became incredibly stimmy and was waking up at 3:30am every morning. He developed a new stim of banging his knuckles on tables and his knuckles had massive calluses that looked like huge warts. Basically after two months Will was almost back to where he was at two. It took another two months to work the gluten and casein out of his system. The knuckle banging did not completely go away but he doesn’t do it enough to have calluses anymore.

After I put Will on the gfcf diet a friend recommended that I read Is This Your Child by Doris Rapp. It was a revelation for me. As I read it I discovered symptoms that I thought were autism weren’t. They were allergy reactions.

We also put Will on the Specific Carbohydrate Diet. It is hard to combine this diet with GFCF because the one nice thing about the SCD is being able to eat cheese. Will’s teacher felt the SCD improved Will’s functioning at school but I didn’t see much improvement at home. I took him off that diet because I didn’t feel the quality of life he was sacrificing was worth the gains. Though, I understand for some children it is more effective than the gf/cf diet.

I recommend every parent try the gfcf diet for at least two months, probably four. It is an easy, if expensive, way to potentially improve functioning, sleeping and decrease maladaptive behaviors. Diet isn’t a problem for everyone with autism but it is for some particularly those with GI issues.

Before starting this diet I recommend that you: 1. Test for celiac disease, opiate peptides, allergies and food sensitivities (IgG). 2. Understand the diet. Know what contains gluten and casein and completely eliminate them. Sometimes food is not labeled so always err on the side of caution.

Before starting the diet read Special Diets for Special Kids by Lisa Lewis. She explains the theory behind the diet. Her website is http://www.autismndi.com/

Sources:

Special Diets for Special Kids vols. 1 & 2

The Kid Friendly ADHD & Autism Cookbook: This has a nice overview of different diets and food reactions.

http://www.gfcfdiet.com/

For information about the Specific Carbohydrate Diet check out:

http://www.breakingtheviciouscycle.info/

I should have figured

Bri and Lizzy loved skiing!  Will and I hung out in the lodge.  Will was a pretty good sport even though I refused to buy him more than one serving of French fries.  He watched Wallace and Gromit while I read.  I dragged him out 15 minutes before the kids finished because I wanted to see them.

Lizzy’s skis kept falling off because she’s so little and she couldn’t hang on the rope pull.  I think she tried for 45 minutes to go up the hill before I got there.  She eventually walked up the hill and tried to put on her skis up there.  After ten minutes I walked up the hill to help.  I held Will’s hand and carried my purse and a big bag filled with DVDs, books, and a portable DVD player up the hill while wearing tennis shoes because that’s the kind of thing I do.  I helped Lizzy get her skis on and pointed her in the right direction.  Then Will and I ran down the hill.

Will was interested in the skis.  He tried to put them on his snow boots.  I’m going to ask one of his old therapists to give him a lesson because he might really enjoy it.  His friend Pete skis.  Possible play date?  No, probably not, as neither Marcy nor I ski and it would be too funny to have both of us chasing our sons down the hill.

My Plot to Take Over the World Thickens – Evil Laughter

(Ok, I admit it’s not a really good plot but I just came up with it this morning.) 

First, the reigning athletic endorser becomes involved in a scandal which creates a need for a new athletic celebrity endorser.  I wait until my kids are old (13, 12, 8) then sign them up for 10 ski lessons.  At which time they should be good enough for the Olympics (right?).  They win gold metals. The money that will surely ensue from product placement and celebrity endorsements allows me to buy a small island.  I haven’t figured out what comes next but I assure you IT WILL BE EPIC!

Does the Search for a Cure from Autism decrease Societal Acceptance of Autism?

A comment left on my post The Great Divide: Trying to figure out the Neurodiversity Movement convinced me to write about controversy between acceptance and cure.

The comment: “For me, the essential problem with the "cure" movement is that, too often, the search for a cure eclipses the acceptance of the autistic as he/she is NOW, and hampers our collective efforts to increase acceptance and respect for individuals with autism and other neurological differences. Again, I'm talking about the "cure movement" in general, not necessarily individuals who support it. I don't have a problem with most individuals who pursue a cure, provided they don't persist in using unproven therapies that are potentially harmful. I do object to groups that use pejorative language to promote the cure ideal, and with the (small, I hope) group of parents who put their kids through hell to find that elusive cure--that tells me it's more about the parent and his/her expectations than about the child's well-being.”

With some parents it’s all about themselves regardless of whether the child is typical or not.  But I suspect you’d put me in that category too because I have used controversial bio-medical therapies.

Does focusing on a cure for autism eclipse acceptance for autism and hamper societal acceptance?

The unthoughtful answer is an immediate yes.  If one truly accepted their child’s disabilities there is no need to cure them.  Naturally, nothing is that simple.  One can love and generally accept a person while trying to change attributes, behaviors and so forth.  Parents should ask their children for better grades if they are capable of more, or to change behavior such as laziness, etc.  Does anyone accept everything about another person and is complete acceptance necessary for a loving, fulfilling and a mutually beneficial relationship?  Most people, rather than accepting everything about another, overlook some characteristics or behaviors.

There is an element of what one could call “unacceptance” in the cure movement.  It is a belief that autism can with therapy or treatment be cured, or its’ symptoms can be alleviated.  I believe that many parents feel an obligation to try to do so.

Part of where one stands in this dispute is decided by whether the parent believes autism is purely genetic or triggered by an environmental toxin, often a vaccine.  If one believes that their child’s autism was triggered by the environment should not their primary focus be on ameliorating the symptoms and curing the child?

I shall use the loaded, yet apt, metaphor of vaccines.  Prior to the acceptance of vaccines as preventative medicine, their use was controversial and regarded as dangerous.  Bio-medical treatments for autism are in the same stage vaccines started at – regarded as controversial and dangerous.  But there is reason to believe that many of the treatments could eventually become as prevalent as vaccine use.  Applied Behavior Analysis, now regarded by many as the Gold Star treatment for autism, was initially regarded as abusive, controversial, and dangerous.

Is acceptance of an autistic individual as they are now worthier or nobler than not accepting their present state?  I could argue that it’s nobler to search for a cure.  Acceptance doesn’t often lead to new discoveries or to as great accomplishments.  But in regards to autism it’s just preference or opinion.  Some children respond to bio-medical interventions and others don’t.  If the child doesn’t respond, that time and money would have been better spent on other interventions.  If the child responds, he makes larger gains than he would have with conventional interventions.

So, in regards to whether acceptance of or trying to cure autism is better, I will definitively say that it’s a matter of opinion.

Collective Efforts:

Do I as a parent of a child with autism have an obligation to society as a whole beyond my obligation to my disabled child?  Yes, I believe I do.  Both my family and my sons have benefited from those who came before us and we have the same obligation to those who come after us.  Does my search for a cure hinder those who will come after us?  And if so, does that obligation override my obligation to my children’s well-being?  I do not believe that in this case my obligation to future generations of autistic people overrides my obligations to my children.  Thus the only question to be answered is does my attempts to cure William of autism hamper “collective efforts to increase acceptance and respect for individuals with autism and other neurological differences?”

What message am I sending to society by trying to cure autism?  Clearly I’m sending a message that I believe it is less desirable to be autistic than typical.  But I would never send a message that William isn’t wonderful or that we regret him in any way.  William, in many ways, is the center of our family.  He is worth any sacrifice we have made for him.  Naturally, I wish he was typical for his sake, for my other children’s sake, for my husband’s sake and for my sake.  It doesn’t necessarily follow that my desire for him to recover is more about me than him.  I believe I’m speaking for most bio-medical parents when I say the realization that my life would be easier and less worrisome if he recovered or functioned at a higher level doesn’t make my attempts to cure him more about me than him.

Does admitting that I believe it is desirable to cure autism confuse the message of acceptance?

I think that people understand that parents want the best for their children.  My friend taught people in our church to sign so they could communicate with her son.  I know that she wished that he wasn’t deaf.  My aunt worries about the future of my cousin with Down’s syndrome.  Working to lessen or eliminate disabilities for individuals doesn’t damage that community’s message –their demands for accommodations and respect.

Ringing In the New Year (in hindsight I’m really glad we didn’t go to First Night in Boston)

One of my husband’s friends came over last night but since their kids are young they left before 7:00.  I dropped off Bri at a slumber party and then things got really fun!  My husband and I played Agricola with Lizzy while Jake and Will watched videos on the computer.

Then Jake started puking.

We put the kids to bed and then played Agricola four more times.

Then we went to bed.

Then my husband started puking.

Then Lizzy puked.

Then we got up. 

I cancelled Jake’s party for today.

I decided to go pick up Bri before I started puking.

She told me that she puked at exactly 12:05am.

I stopped at the store for 7up and crackers.

I asked my husband if he wanted to play Agricola again but he said maybe later.

Neither I nor Will have puked yet.

Happy Birthday Dad!

I bet I'm the first one to wish you a happy birthday.  I love you!