5 Years of Autism

On May 19, 2008, The Boy was diagnosed with Autism. that was five years ago. FIVE YEARS. 

I wrote about the day The Boy was diagnosed (part 1) and where we are now (part 2) on Parents.com.

• 5 Years After An Autism Diagnosis (part 1 – On The Day My Son Was Diagnosed with Autism): Nothing I read prepared me for the pain, anger and sadness that I felt. On the day Norrin was diagnosed, I went into our bedroom, closed the door and buried my face in my pillow screaming as loud as could. Punching and kicking like a three year old having a tantrum. Why Norrin? Why Me?
• 5 Years After An Autism Diagnosis Part 2 : Five years ago I couldn’t see beyond all the things Norrin couldn’t do. Now I see how far he’s come and celebrate everything Norrin can do. All the little things like a smile or a wave or a spontaneous WH question.

Letting Go of Mainstream Dreams

I've been up since 4 am.  Not by choice.  That's the time The Boy woke up. 

By 5 am, I was up and out of bed.  Threw a load of laundry in the washing machine.  Laced up my running sneakers and headed out the door.  (On Day 4 of excercising)

By 6 am, I was half dressed and packing up The Boy's bookbag for his first day at a new school.

And by 7 am, The Boy's school bus pulled up in front of our building.  I introduced myself to the new driver and matron.  The Boy jumped on the school without looking back or a goodbye kiss.  But The Husband and I called his name and we got the goodbye kisses we needed.  

Walking back up to our building, I started to cry.  I know, I know - I'm a cry baby.

Norrin has been taking the school bus since he was a baby - barely 3 years old.  He's been taking the bus since before he could even talk and while he was still in diapers.  

This is the 3rd school he's been bussed to in the last four 4 years.

You would think I'd be used to it by now.  But it doesn't get easier.  Handing your child over to a stranger for the first time.  And this new school is the farthest The Boy's ever been.  

Don't get me wrong - I LOVE the new school. I'm so happy he's there.  It's the right place for him to be.  

It was just never the place I expected him to be.

When The Boy was diagnosed with autism 4 years ago and we started the therapies - I remember The Husband telling me, "This is just to get him up to speed.  By the time kindergarten starts - he'll be able to go to a regular school."

Because for many parents that's the goal.  Mainstream education.  It's the dream.  

I think there was this tiny part of me that wanted to believe that.        

That's the thing about life down the autism rabbit hole.  You can make peace with it,  embrace it but accept it?  Acceptance is not a one shot deal, it's an on going process.  There will always be something new to accept.

The Boy's kindergarten year came and went.  And the fact is, he couldn't cope in a typical public school.  Even in a classroom of 6 kids.  Even with all the accommodations.  Even with the after school ABA therapists coming to the house 4 days a week.  Even with sensory gym on Saturdays.  The Boy still couldn't truly be successful in a 'regular' public school. Granted The  Boy was set up for failure but this last year was a huge eye opener for me.

So this morning as I waited next to a mother with her 13 year old son - who was also waiting for his yellow mini bus to appear - I realized that The Boy may never go to a school within walking distance. 

The Boy may be 13, 14, 15 years old and will still need me to wait with him for the mini bus to pick him up.  The Boys new school goes to 21 - he will probably be there until that age.  The Boy will probably never have a mainstream education. I have to just let that dream go.  I'm okay with it.  At the end of the day, all I want is for The Boy to be in a place where he can be happy and accepted for what he can do.  I know The Boy's education is about goals not grades. 


And I also know there are plenty of new dreams to be had.               

      

He Basically Failed Kindergarten & I'm Okay With It

Today was the the last day of school for New York City Public School kids.  It's also the day  parents start bragging on Facebook about their kids grades. 


Don't get me wrong, I'm not hating on those parents.  I'm the first one to brag about my kid when he does something amazing.  It's just that based on his report card, I have nothing to brag about.  Because The Boy pretty much failed kindergarten and if he were a 'typical' kid - he could have gotten left back.  


When I was a kid there were letter grades, now kids are graded by numbers: 


4 - Exceeds grade-level standards
3 - Meets grade-level standards
2 - Approaches grade-level standards
1 - Far below grade-level standards


And even though it's supposed to be a special education class for children with autism, The Boy got a 1 in almost every single subject.  It was no surprise to me that he got a 3 in Reading.  But everything else?  A big fat 1.   

For the most part, I don't care.  Because I have an understanding of The Boy's autism.  I know that the way the material was being taught was both inappropriate and difficult for him.  


I also understand that grades - in the grand scheme of things - don't matter.  Because I know a grade will not determine how much The Boy actually knows.  And I know goals are what really matter.  And he's met a lot of personal goals this year.  


Which is why I don't understand why The Boy got a 1 in Personal and Social Growth?  (Okay, maybe this grade bothers me a little bit.)


This year, The Boy had a friend from school over.  They played all afternoon and since then he's been asking for her and his other classmates.


This year, The Boy asked "Hey where's Dad?" when he realized he wasn't home yet.


This year, The Boy has made gains in potty training and self help skills like dressing and grooming.  


This year, The Boy's spontaneous speech has made me stop dead in my tracks. 


This year, The Boy learned how to count to 100.  


This year, The Boy started typing on the iPad - searching for things he wanted to watch.  


This year, The Boy's handwriting improved.


This year, The Boy drew a picture (rather than writing what he was asked to draw).


This year, The Boy raised his hand in class when he wanted to speak.


This year, The Boy sat in a crowded cafeteria and managed to eat his lunch.


This year, The Boy succeeded in an environment where he was set up to fail.


This year, in spite of all his challenges at school he has toughed it out.  And he's made progress.  Maybe it's not up to the teacher's standards but The Boy continues to surpass mine.  


Because I know the amount of work he puts in.


Because I know the effort he makes.  


Because I see how hard he tries.


And it's a shame that The Boy's teacher couldn't see the same.     




  

And One Time at Atlantic City...

It's June 1st and there are about 15 days left of the school year...not like I'm counting or anything. 

There was so much I wanted to write about during the month of May but I just never got around to it.  I wanted to write about my mom, Mother's Day and specifically about The Boy's 4 year Autism diagnosis anniversary.  He's come so far and I'm so proud.  But those posts are in drafts, I just can't get through them...

Even though I'm still on my White House/LATISM Top Bloguera high, my mind is cluttered with a whole bunch of other stuff.  There is too much uncertainty.  And I feel this unbearable weight on my shoulders. And I feel like my limbs are being pulled in different directions and there are whispers in my ear.  And I'm not sure which way to go or what whispers to listen to. (I'm not losing my mind or hearing voices - I just have too many people offering different kinds of advice.)

Thinking about the last 4 years makes me think about that one time at Atlantic City.  We had just gotten the autism diagnosis.  I had just graduated from Lehman College. And after the stressful evaluation process, The Husband and I went to Atlantic City for the weekend to relax.  We had Saturday night tickets to see Bill Maher, we had a nice dinner, a few drinks...
      
Sunday morning we woke up and I wanted to take a walk on the board walk.  I hadn't been to Atlantic City since I was a child.  And I think I wanted to relive the simple moments of my life.  Before responsibility, marriage, a kid and disability.  A time when my mother made all the big decisions in my life.

The Husband and I strolled up and down the boardwalk.  The sun was bright and the ocean air filled my lungs.  We purchased hot dogs and freshly squeezed lemonade.  And the cold lemonade was perfect - almost as good as mother's. 

And then out of nowhere, a homeless man snuffed me.  I had never been punched that hard before in my life.  I didn't see stars, like in the cartoons - I saw nothing.  And I fell to floor, spilling my lemonade all over my feet.

I heard the stumble of feet, a thump and grunts.  And I see The Husband has the homeless man pinned down.  There's a crowd and my hands shook as I called 911 - my head throbbing and my feet sticky.  

When the police finally arrived (15 minutes later), they took the homeless man away.  I didn't want to bother pressing charges.  I looked the homeless man in the eyes - he wasn't truly violent, he was either mentally or emotionally unstable.

I spent the 3 hour car ride home thinking about that man.  I felt sorry for him; he most likely had no one in his life to care for him and make sure he got the help he needed.

Whenever I feel discouraged, whenever I feel tangled in red tape, whenever I feel frustrated about the system - I think about that man on the boardwalk who knocked me on my ass. And I think to myself - I am fighting to make sure The Boy never has to wander up and down a boardwalk with nowhere to go.

On a lighter note...and speaking of fighting. Doesn't The Boy look like he got into one?  I'm losing my baby, one loose tooth at a time - he's growing up.  I want him to slow down.

Check out Mrs. 4444

at Half Past Kissin Time 

for more Friday Fragments.

Words With: Christina Mendez ~ Model, Mom, Advocate

A few weeks ago I had the opportunity to talk with Christina Mendez.  If you follow the NYC hip hop fashion scene or are just a fashionista in general - you'll recognize her face.  I had seen her face before but it wasn't until I read her story on Latinas Inspire that I realized we shared a common bond.

We are both Latina (I'm Puerto Rican.  Christina is Dominican).  We both are native New Yorkers.  And, most importantly, we are both autism moms.  


You know in the first five minutes of talking to someone whether or not you click.  Within the first few minutes of talking to Christina, I knew we clicked. Especially when she said, "I'm hustling just like you." We both immediately understood each other.  We laughed like old girl friends.  Our "story" is similar is so many ways.  And we both want the same thing for our sons - acceptance, understanding and respect.     

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When did you first realize there was something "wrong" with Damian?

I was young when I had Damian.  As a first time mom, I didn't realize.  I just thought that Damian was a late bloomer and that every child is different.

How did you/your family react to the diagnosis?

I was shocked.  At the time, Damian was enrolled in day care.  His teacher suggested we have Damian evaluated.  At 2 years old, Damian was diagnosed with severe autism.  Doctors and specialists told us Damian would never speak, read or write.  Damian was diagnosed in the mid 1990s, no one was really talking about autism the way they are now. 

The diagnosis was extremely difficult for Damian's dad.  He refused to believe it.  

As for my mother - she is in denial, even today.  She will never say that Damian is autistic. She says "he has problems."  But Damian is her baby, she spoils him.

What was your defining moment of acceptance?


Even though the diagnosis was a shock, I didn't go crazy over it.  I was at peace knowing and somehow I knew the diagnosis wasn't a death sentence.  


I remember during my senior year of high school - I was a bit of a wild child but in my last year - I had an internship working with autistic teenagers.  We were around the same age, but I was helping to take care of them and I just fell in love.  When Damian was diagnosed, I felt that God had prepared me for raising a child with autism.


How did you get involved with Autism Speaks?


I used to work for Verizon and was involved in the Hispanic Support Organization (Verizon employee group).  Every year we selected a charity to donate money.  The money we raised through the group, Verizon matched.  One year, we raised money for Autism Speaks and I developed a friendship with Jena Greco (Autism Speaks NYC Walk director).  


Do you think Latinos are as aware when it comes to Autism?


Not really.  I've been working with Autism Speaks for 6 years and there isn't an A-List Latino celebrity supporting the organization.  Autism isn't something Latinos openly talk about.  And I believe as a community, we need someone to say it's okay.  (Christina made reference to an article on SheKnows - Celebrities with Autistic Children)      

What has been the most rewarding aspect of being a special needs mom?  

Seeing how far Damian has come.  They said he would never speak.  He now speaks both English and Spanish.  It's not always age appropriate - he still talks about Elmo - but he can communicate his needs and wants.  We never knew the progression was going to happen and it has.  Damian has worked really hard to get where he is - he's taught me so much.  He has taught me to appreciate the little things.  

   

Check out Christina and Damian - 

 

Through the Looking Glass: Bean's Story

Submitted & written by Brandy P.  Originally posted on May 14, 2011 at My Jumping Bean and reposted here with permission.
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January 19, 2010…this date probably doesn’t have a significant meaning to you unless it happens to be your birthday, anniversary, or some other milestone with cause for celebration.  For my family, that was the day our world got turned upside down.  That was the day our baby girl got diagnosed with the dreaded “A” word…autism.

We noticed at around 18 months old she wasn’t hitting some of the same developmental milestones other babies her age were hitting – not responding to her name, hardly any eye contact, only 1 or 2 “words” like mama, dada & not directed towards us.  I was in complete denial at first – no way, not my baby. 

 At her 2-year check-up we told her pediatrician about our concerns & she immediately told me to call Early Intervention, that it was probably just a speech delay.  I made the call the very next day & the process started.  Countless evaluations later, the services began & she was receiving occupational & developmental therapy twice a week.  (I should add that EI only goes up until they’re 3 yrs old).  A few months into EI, one of her therapists suggested that we take her to a neurodevelopmental pediatrician, which I dreaded taking her to, b/c I knew that was the doctor who could give the autism diagnosis.  I was pregnant with Logan at the time & close to my due date, so I made the appt. for Jan. 19th.  I can’t tell you enough how much I was DREADING this appointment.

January 19th came & I prepared myself as best I could to hear the “A” word, or so I thought.  We got into the office & the neurodevelopmental pediatrician had 5 or 6 toys layed out on the floor, & the entire time she observed how Bean played with the toys, or tried to play with her; she also asked me a ton of questions.  I was so nervous every time I saw her jot a note down on her clipboard that I felt nauseated.  Once she was done with her observation, she looked at me & told me, “from my observations, I would diagnose her with an autism spectrum disorder.”  All my so-called “preparedness” went out the window & I could feel the tears welling up in my eyes and a sharp pain in the back of my throat.  The doctor started laying pamplets down in front of me for autism support groups, and various other information with the infamous puzzle piece on them.  I was in shock.  Is this really happening to me?  To my baby??  We left the office & I could barely speak (which most people know doesn’t happen often).  As soon as I got to my car I broke down.I almost felt like I was mourning the loss of a child, when I had my beautiful, healthy, perfect baby girl right in the back seat totally happy & content.  It is the hardest feeling to try to explain to people.

As soon as I got home, I went right online & started researching anything and everything I could get my hands on regarding autism.  The first thing I looked up was to make sure that autistic people have normal lifespans, which everything I found assured me that it doesn’t have any affect on length of life.  Of course, that wasn’t enough for me and the next morning, I called the doctor just to double-check.  She laughed & again assured me that it has absolutely no affect on lifespan.  Ok, I’m good now.  WRONG.  I was a complete mess.  I would start talking about it to my husband, or my parents & break down in tears – I could barely get through a sentence without getting upset. And now we have her baby brother – is this something we’ll have to worry about with him?? My mind was racing all the time.

As time passed, and I researched more, I realized that I only wanted to hear the positive things. I didn’t want to hear anything negative.  I found so many websites of parents saying “my child has autism so he won’t do this, or can’t do that.  How do they know?  Do they have some secret time machine that they’ve somehow kept under wraps from the media??  Give these kids a chance!  I was furious after seeing that site.  After that, I realized that I only wanted to see the positive side of autism, the hopeful side.  Any time I start to feel down, I think of these poor families with children in St. Jude’s Hospital – how awful must that be?!  Thank goodness I have a healthy, happy child who doesn’t have a life-threatening illness. 

Once Bean aged-out of Early Intervention, we immediately put her in the Preschool Disabled program in our local school district.  Her birthday is May 1st, so she was able to start in the extended school year (ESY) & get all the therapies that she needed right away. 

Currently, she is in full-day preschool and making progress every day!  Her teachers & aides told me that it’s scary how smart she is, b/c she can figure things out that other kids can’t!!  She does 1/2 day in preschool disabled & the other 1/2 in the autistic preschool class.  She also gets speech therapy, physical therapy & occupational therapy a few times per week.  In addition, we take her to an outside speech therapist who coordinates with her school speech therapist.  I can’t tell you how much I recommend putting autistic kids in preschool as soon as possible.  See if your school district offers the ESY. Once you get them into the preschool program, they will develop an IEP (individualized education program) for them based on their needs & the goals that you have for them.  You are the best advocate for your child.

It took me about a year to really be comfortable telling people about Bean, not b/c I was ashamed, but b/c I was afraid that she would be treated differently. I didn’t want the label of autism to be the first thing people thought of when they heard her name.  She is so much more than that, autism is just a part of her, it doesn’t define who she is. Once I really learned about it & let everything marinade in my head, I realized how much I wanted people to understand what this is.  So many people have misconceptions about what autism is & that needs to change.  I became “Captain Autism” in a sense, promoting awareness anytime I could.  I recently joined a support group through an organization called FACES Autism Support Network, and am so excited to be a part of it. 

The bottom line is, Bean is still Bean, she just happens to have autism. Just like someone who wears glasses happens to have bad vision.  It doesn’t define who she is, and it makes her unique in so many ways.  We are more proud of her b/c we know how hard she has worked & how far she has come.  Don’t get me wrong, we certainly have our bad days, or days where it seems like there’s no light at the end of the tunnel, but the good days totally outweigh the bad.

~~~~~~~~~~~~~

Originally posted on May 14, 2011 at My Jumping Bean and reposted here with permission.

the LITTLE things are a BIG deal #4

Post #4 for the LITTLE things are a BIG deal meme.  It's easy to link up and share your story. [copy/paste the button (above) in your post or sidebar.  Refer to my blog in your post & link to my current "the LITTLE things are a BIG deal" post. Link your post with Linky Tools. And if you link up, leave a comment.  Otherwise, it's like going to a party & not saying hi to the hostess.] For information click HERE.  You do not have to be a special needs parent to link up.  AutismWonderland is a community.  And I want to celebrate your every day wonderful moments with you. 

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Last week I posted this picture of a little project The Husband and The Boy worked on. It was pretty cool.  The two of them sitting together at the table.  The Husband, prompting The Boy.  The Boy, really listening and following directions.  

And thinking about the two of them, sitting together reminds me how lucky I am to have married a man like The Husband.  Especially after I read this post by Autism Daddy.

Obviously, I'm not a man but I think it's harder for fathers to accept autism.  And I'm almost certain it's the reason why so many men choose to leave. 


I remember the day when The Boy was diagnosed.  How The Husband's hands shook.  How he cried in the car before driving us home.  How it took him a long long long time before he actually said the words, "My son is autistic."  

We never really talked about it then, but I knew how devastated he was.  I knew how important it was to him that The Boy play football and baseball and golf.   I knew The Husband couldn't wait to take The Boy to his first game at Yankee Stadium.  And when The Husband heard the words "your son has autism,"  I think he wondered how it would impact their relationship.

But it's been three years since The Boy's diagnosis.  And The Boy and The Husband have an amazing relationship.  And I think it's made The Husband realize, they don't need sports to bond. 

Two years ago, when The Husband came home with a Frog & Toad book, I didn't think The Boy would like it.  "Oh he will.  It was my favorite when I was a kid," The Husband told me.  


And he was right.  The Boy LOVES Frog & Toad.  Laughs out loud, when we read it. Truth be told, laughing out much louder when The Husband reads.

And then last week, as The Husband and The Boy worked on their little plane project.  It's not the first time they've done something like that.  They both enjoy it.  It's their time to bond as father and son. 

The Husband has found a way to connect - without sports.   They have found their "thing" and it's good for both of them.

This is the finished product.  It took less than an hour (not including the time needed for the paint to dry).  But it's a memory that will last our lifetime.  

 

Autism doesn't mean a son needs his father less.  It means a son needs his father even more. 

Autistic Today. Typical Tomorrow? (or Who will benefit from the proposed changes to the autism definition?

If you have a child somewhere, anywhere on the autism spectrum, you probably read this article by now.   If you haven't, here are what I deem as "the highlights": 

The definition [of autism] is now being reassessed by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, the first major revision in 17 years. 

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The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”

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At least a million children and adults have a diagnosis of autism or a related disorder, like Asperger syndrome or “pervasive developmental disorder, not otherwise specified,” also known as P.D.D.-N.O.S. People with Asperger’s or P.D.D.-N.O.S. endure some of the same social struggles as those with autism but do not meet the definition for the full-blown version. The proposed change would consolidate all three diagnoses under one category, autism spectrum disorder, eliminating Asperger syndrome and P.D.D.-N.O.S. from the manual.

(I won't divulge my immediate reaction upon reading this article.  While in real life, I may have quite the potty mouth, I just don't write that way.) 
 
If the proposed changes are made, this will not impact The Boy.  He's autistic.  He'll fit the criteria today, tomorrow and quite possibly twenty years from now.  No ifs, ands or buts about it.

But it could impact many people I know.  And I know how critical services are to their families. 

What Do Services Have To Do With It?

I don't know how it works in other parts of the country/world?  But within New York City?  Diagnosis is EVERYTHING.  And even with a diagnosis, you still need to fight tooth and nail for appropriate services.  They're just not given out like candy.     

And if the criteria of diagnosis changes...so will the services.   Services like OT, PT and Speech.  And school placements in smaller classrooms or specialized school programs unfunded by the New York Department of Education.  

More importantly, how will that impact Special Education Laws?  What will become of appropriate school placement?

And when I think of my best friend's daughter who has a PDD-NOS diagnosis - a little girl who is at age level, cognitively but has speech delays and requires a smaller classroom setting. She's currently in a specialized preschool and receives OT and Speech.  If the criteria changes - will she no longer qualify for special education?  Will the DOE recommend she be placed in a typical classroom of 25 or more kids?  It's quite possible.  But it's not where she belongs.  And it's absolutely not where she will succeed.  (Not as of now anyway.)

For the last few years, I've heard about budget cuts to special education, special needs services and medicaid.  I've heard of agencies and schools shutting down and therapists moving on to other careers.  In areas like The Bronx, where services and therapists and finances are already extremely limited, what will families do to ensure their child gets the therapies they need?  Will their children have a chance?

And please don't me get started on insurance companies who will do absolutely anything not to pay for services...

As it is, The Boy has a diagnosis and my insurance still gives me the run around.  

Maybe I'm reading this article all wrong.  I mean, I'm not a doctor.  Nor am I business analyst.  I'm just a mom.  But to me, the only people who this may benefit from the diagnostic change criteria are government agencies.  

So MY Big Question is:

What exactly are they trying to nip in the bud?

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If you are opposed to the change - please sign this petition.
(petition started by the Mom behind The Aspie Side of Life)   

Words With: Jillsmo of Yeah Good Times

 

Name/Blogging Name: Jillsmo

Blog: yeahgoodtimes.blogspot.com

# of children/diagnosis: 2 children: Child 1: Autism; Child 2: Uber NT

Intro in her own words: Jillsmo lives in Berkeley, CA with her 2 children, 1 husband and 4 cats. She writes about autism, family, cats and whatever else happens to go through her head at any particular moment. She always draws REALLY bad stick figures.

AW: What was your first reaction to your child’s diagnosis?

J: Denial. The Developmental Pediatrician who gave us the diagnosis had, 6 months earlier, diagnosed him with Global Developmental Delay and had told me, specifically, “He’s making good eye contact so he isn’t anywhere on the spectrum,” and then when we went back for our follow up, she changed the diagnosis to PDD-NOS. She explained it as being “on the autism spectrum, but not autism.” That was the mantra I kept repeating in my head, and to others, for the next 9 months. “He’s on the autism spectrum but he doesn’t have autism.”

AW: What was your defining moment of acceptance?

J: I got pregnant with Child 2 about a month after Child 1’s PDD-NOS diagnosis and remained in denial for the duration of my pregnancy. Shortly after Child 1 turned 3, it was around March of 2005, he started scripting. “I think I can, I think I can, I think I can.” I thought it was adorable. But then he moved on to script other things, and after a few months was scripting constantly, but never said anything else. Ever. It was a relentless stream of Elmo and Zoe’s lemonade stand. I was forced to start researching this “repeating things he’d previously heard” thing that he was doing during every waking moment, and as much as I tried to ignore how many websites told me this was a symptom of autism, it became rather obvious. The physical act of having a baby, in July 2005, was an enormous cathartic experience that snapped me out of my denial almost immediately. I spent Child 2’s first few weeks not marveling over my new baby, but mourning my other one.

AW: What inspired you to start your blog? 

J: Allie Brosh inspired me to start my blog; it had nothing to do with autism. I used to hate blogs; I thought they were only about liberal or conservative blowhards spouting off on whatever their opinion on politics was, and I have no interest in hearing what other people think. But then I discovered Hyperbole and a Half and realized that blogs can be anything you want them to be; they aren’t just about politics. I spent about a week reading everything she had ever written, and I thought “I can do this.” Well, not the artwork part, but I can be funny and I can write that down and hit the publish button, too. So the blog was created with absolutely no purpose except for me to rant about whatever was in my head and maybe make some of my online friends laugh. Since autism is such a big part of my life it was natural that I would spend a lot of time talking about it.

AW: What has been the most rewarding aspect of being a special needs parent/writer/advocate?

J: That’s actually two different questions for me, so I will split them up:

a.     I spend a lot of my time offline talking to parents in my school district about their children’s education and I help them figure out how to navigate the school district in order to get the best services their can for their kids; I would be doing this regardless of the blog, though. It is definitely hugely rewarding to be able to help somebody learn what their rights are so that their kids can the best education they can.

b.     As far as my blog goes, the most rewarding aspect has been meeting adult autistic who can help me try to figure out what goes on in this beautiful head of my Child 1. They have been where he is and can not only help me understand what he’s thinking now but they give me a window into his possible future. They make me feel hopeful for him; after all, they went through all of this without the services and support he’s getting now, imagine how much healthier and happier he will be as a result of all the work we do?

AW: What advice would you offer parents of recently diagnosed children?

J: SUPPORT IS CRUCIAL!! You cannot do this alone. Even if your family and friends are wonderful, and unfortunately they so rarely are, you’re going to need a bunch of friends who can relate to what you’re going through; who you can vent to when things get hard. Don’t try to be a hero and do this alone, because you simply can’t. You may not be able to find a support group that you can meet in person (but who has time for that, anyway?) but you can find something online. If you need help finding a community, email me! I’ll help you!!

AW: Feelings on diagnosis in 6 words or less:

J: Not a death sentence.

Gentle Christmas - a "Just a LiL Blog" Post

photo courtesy of www.BloggingLily.blogspot.com

"Gentle Christmas" is part of the Through the Looking Glass series (guest post)

I discovered Jim's blog,  "Just a Lil Blog," a few months ago and from the first post I read - I was hooked.  Jim has made me laugh and cry, his voice is honest and poignant. 


His blog header says it all: The true life adventures of a little girl with autism, and her struggles raising her two parents with only a big sister to help her.  

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Lily sees “Rockin’ Santa” on the hearth the morning after we decorated the Family Room.  She wanders over to pick him up, saying, “Santa Claus”, clearly. 

We smile and I ask her, “Do you want me to turn him on?”

Maybe we’ve learned our lesson from all of Lily’s adventures with other animatronic decorations.  She’ll be fascinated with him, no, obsessed with him, for a day or two before losing interest.  I thumb the switch on and adjust the potentiometer dial to a higher volume.  “Rockin’ Around the Christmas Tree,” starts to play.  It’s been twelve months since I’ve heard it.  It doesn’t make me cringe yet.  It will.  Santa begins to sway to the music, cuttin’ a rug to Brenda Lee’s musical stylings.  Lily gets excited and carries Santa too far from the power strip.  The chord pulls taut then the lead pops out from the back of Santa’s boot where it trails across the carpet to the plug-in and he goes silent, his Achilles heel pierced by an unseen arrow, or unpierced I suppose.  Lily stumbles a bit at the unexpected release and looks around in slight confusion.

“You have to stand still with Santa.  Be gentle,” we admonish her, carrying Santa (and her) back to the hearth and plugging him back in.  The music starts over.  This time I do cringe a little.  This process repeats itself a few times before the lesson sinks in and Lily contents herself with standing or sitting next to the power strip with Santa, or as far as he’ll reach without pulling from the socket, a trip wire of Christmas spirit waiting to snare the unwary (her big sister, Emma, most likely).

photo courtesy of www.BloggingLily.blogspot.com

The Christmas tree is up and decorated.  Burgundy velvet ribbons weave in and out of pine boughs.  Limbs drip with sparkling glass and shining brass ornaments, reflecting and refracting the glint from hundreds of white lights.  Lily investigates it periodically.  Once she leans in very close.  The ‘needles’ (it’s an artificial tree) are beaded with ‘ice’.  She opens her mouth widely and says, “I bite tree”.  I watch her from my chair, wondering where this is headed, but she leaves after a few minutes, the tree unbitten.  This threat seems to have been more to see whether I’d let her bite the tree than for any gratification tree biting might have offered her.

Later she stands next to the tree watching me intently, taking blind swipes at it without taking her eyes from mine, an attention getting device of some kind, though my attention is fixed firmly on her.

“Be gentle with the tree, Lily,” I tell her, for the tenth time.  She hits it this time.  The bows sway slightly and a faint jingle of ornaments shifting and swaying can be heard.

“If you hit the tree again, Lily, you’re going to have to sit in timeout.”  She hits the tree again.  She sits in timeout. 

She leaves the tree alone then, at least for a while.

An advent calendar sits in the hallway.  It’s a big one, not one of the paper cut-out kinds with the flaps.  It is shaped like a house with 24 doors.  Behind each numbered door is candy, or a tiny ornament.  When the doors open “Santa Claus is coming to Town” chimes, and a shuttered window like a cuckoo clock door opens revealing a child in winter clothes opening a Christmas stocking full of presents.  Below the door, a scene animates; little townsfolk skate in circles around a tiny town that lights.

Lily ignores it, which is a blessing.  Her sister, Emma, opens the doors daily for them both.  Lily doesn’t really eat the candy behind the door, and the ornaments for Emma’s tiny tree are too fragile to be entrusted to her tender care, so really it’s just for Emma.  I dread the day she decides it’s no longer beneath her notice.

photo courtesy of www.BloggingLily.blogspot.com

On the main floor a large posterboard cutout of Santa Claus’ head smiles benignly from the powder room door.  It’s a remnant from some past Christmas party, and Emma loves it, so we keep it, tacking it to the powder room door. 

Lily walks past the door and pulls it off the tack.  The tack clatters to the floor, skittering across the tile before scribing slow rocking quarter circles across the tile and coming to rest.  I scramble to pick it up before she steps on it in her stocking feet. 

“Lily, be gentle with Santa.  Don’t pull,” I tell her.  I tack the fallen head back onto the powder room door and guide Lily back into the ‘safer’ environs of the Family Room. 

Santa sits ensconced in velvet.  A human-sized elf stands to his right with a clipboard.  We have a number so that we don’t have to wait in line for our turn.  Lily is allowed to play at the mall playground or investigate the Christmas train while we kill time.  All the children waiting to see Santa are like Lily.  And all of the children waiting in line are different than Lily.  But you know what I mean.  When it is Lily’s turn the elf standing guard over Santa’s person hands us a form to fill out.  Both of us are there so one of use rides herd over Lily while the other fills out the form.  It occurs to me that if I were a single parent, I’d have to fill out the form at the same time as I was watching Lily.  I shake my head that an event designed to minimize stress for autistic kids and their parents could triumph so magnificently overall but stumble at the finish line over such an obvious issue.  I again thank god that I’m not a single parent and that my wife is always there to support me.

Emma asks if we think people will think she’s autistic if she sits on Santa’s lap with Lily.  Part of me feels sad at this.  I ask her if it matters to her whether people think she’s autistic or not.  I think a part of her feels ashamed at having asked the question, as if asking the question means that on some level she’s not proud of Lily.  She thinks for a moment, then shakes her head no.  This brightens me, and appears to brighten her as well.  We ask her if she still wants to sit on Santa’s lap.  She nods and says, “For Lily.” 

When the paper work is filled out, Lily sits on Santa’s lap.  She occupies his right knee, while Emma sits atop his left.  She is calmer when Emma is with her.  Nevertheless a stranger with a white beard is holding her on his lap.  She suffers this curiously for 5 – 10 seconds.  She doesn’t yank his beard, but seems to find brief fascination in the tuft of fur dangling from Santa’s hat.  We furiously thumb shutter buttons and pray for quick focus on digital cameras.  She squirms a bit and escapes to a safe distance to watch as Emma relays both of their Christmas wishes.  Lily’s are guesses.  She never really asks for anything except McDonald’s.  Santa will definitely be getting her a gift card there, if he wants any cookies this year.

When we visit our families’ houses there are lots of decorations everywhere.  It’s beautiful, but dangerous for Lily.  She wanders from “no” to “no”, generally wreaking havoc on everyone’s’ houses without really understanding what all the hub-bub is about.  The family is gathered together.  There are more people than usual in each house, more “nos”, more music and laughter and expectations. 

We try to keep her entertained and minimize the destruction and still visit with the family, but it’s stressful.  Every holiday visit is stressful.

Lily knows who Santa is without really registering what he’s supposed to represent.  Lily knows how to say “Merry Christmas” (when prompted) without really understanding what that represents either.  We put the gifts in front of Lily on Christmas morning, and sometimes she rips the wrapping paper, and sometimes she ignores it completely.  She doesn’t look forward to Christmas, or get excited Christmas Eve for the jolly fat man’s impending housebreaking.  Christmas for Lily has all the stress it has for me, but none of the magical payoff.

I’m doing my best to try to see the world from Lily’s point of view.  I feel like I’ll be better equipped to help her if I try to see things the way she does.  I feel like I’ll better understand what she needs and wants.

Christmas is like magic to me.  But Christmas is like magical holiday torture to Lily.  Lily’s sister, Emma, loves it.  We all want Lily to love it too.  But she doesn’t.   And that’s okay.  We’ll still fight the good fight.  We’ll still try to make it special for her without removing those things that also make it special for her sister.

Some things we can’t (or won’t) change.  The decorations will still go up.  The music will still play.  We’ll still visit family.  And Santa will still be the jolly prowler, sneaking into our home when we sleep to distribute presents.  Even once Emma “knows”, that probably won’t change.

The biggest change and gift we can give Lily for Christmas is to adapt our expectations of what she’ll get out of the experience to something more ‘reasonable’ given what we know about what Lily tolerates/likes/loves.  She still loves the music.  She’ll get presents she’ll enjoy (probably).  But Christmas is NOT magic for her.  Maybe it will be someday, but for now it’s stress layered on top of stress.  It’s noise and crowds and intriguing fragile ornaments and decorations that invite, no demand, inspection but that cannot be touched.  Our expectations for Lily need to be filtered through Lily’s point of view. 

We need to understand that Lily will want to hear “Rockin’ Around the Christmas Tree” dozens and dozens of times.  We need to understand and be patient with her when she investigates the tree, or pulls Santa off the door, or opens the advent calendar out of order, or breaks Christmas bulbs at her grandparents’ houses.

Lily is a happy little girl.  And it seems ironic that we’d take that happy little girl and make her miserable in an attempt to get her Christmas experience to line up with our expectations of what her Christmas experience should be. 

Lily will have a merry Christmas, though Christmas day might not be any merrier than any other day of the week; December may be no jollier than any other month of the year.  But if we’re patient with her, and try to see things a little bit through her big brown eyes.  Maybe it won’t have to be less merry, less jolly.  And relaxing our own expectations might make our holidays a little happier too.

It’s not reasonable to take a child whose entire life and comfort is bound so rigidly to structure and routine, insert ten times the number of restrictions and expectations for one month, and expect perfect compliance, or even anything approaching perfect compliance. 

So to the extent that the holiday stresses will allow us to relax, we’ll relax around Lily during the holidays, and if not ignore her occasional forays into forbidden realms outright, at least understand them and be patient and understanding with them, remembering to gently tell her to “be gentle.”