Tuesday, October 25, 2011

The most special of bonds: Emily and Sarah's stories

Emily and Andrew celebrating his 11th birthday

I have written about Andrew and his autism spectrum disorder dozens if not hundreds of times over the years, his accomplishments and challenges, school placements, the medications tried with enormous amounts of both trepidation and hope, quirky obsessions and downright mind-boggling behaviors, savant-like skills, and how autism as a whole effects our family.  This blog contains a whole lot of "the good, the bad, and the ugly" about how Andrew lives with autism, as well as what being an autism mom means for me.

What has never been included here, however, is how Andrew's special needs have affected his siblings.  Andrew's three sisters all had the opportunity to write down their thoughts, the younger two decided to accept the challenge.

They say things better than I ever could, through the lenses of children who perhaps have lost a bit of their childhoods because of their brother, despite the fact they love him very, very much.  Keep reading for a honest portrayal of being the "sib" of a brother with autism, written by those who will be around long after I am gone and hopefully still love him.

Emily's story:
        My brother Andrew is very special to me.  My brother and I had a great relationship and would do everything together, at one point I was the only one he liked and the only one that could calm him down. As we grew up I started realizing that Andrew and I had changed and he would embarrass me in front of my friends. Today Andrew always says how much he hates me and calls me "Buggy Emily". Every day is a challenge with Andrew. His Autism has changed our family but at the same time I couldn't imagine him with out Autism.  Even though Andrew says he hates me I will always love him.
       As Andrew's sister I have seen him seen him go through different phases and seen him grow up. He has always loved weather and wants to be meteorologist. He loved having the chance to meet the local news station's weather man who he now stays in touch with. Andrew has also had an obsession to Blue's Clues several times and made a board game about it.  Andrew used to go to our cat Maddie when he was mad and would say "Hi Maddie, with the pretty pink paws." He also has a huge obsession with Build-A-Bears and he talks to them.  All 30 something bears are very loved and you can tell if you look at them. In the end Andrew is very special to me. 

Written by Emily Elizabeth, age 10.5 

Sarah's story:

Having a brother with autism is very hard.  It is hard for many reasons, including:
  • He is very noisy
  • He can't control his feelings
  • He goes through difficult phases
But there are good things about having a brother like Andrew:
  • He is very smart
  • He likes Build-A-Bear and I can use his toys' clothes for mine
  • He can be very sweet
One reason why it is hard for me to live with Andrew is that it sometimes feels like he gets all the stuff and I don't get as much.  Another reason is that since he goes through phases very quickly he might want to play with you and want to do things with you one day, and the next he may seem to hate you and even want you to live in a different country (he has actually said that).  And your plans can always have to change because he may want something and it is hard for my parents to solve the problem.

I was assigned to write a "Concrete Poem" for school, which is a poem in which you combine art with the careful arrangement of words- in, around, or used to create the image.  I wrote about having a brother with autism.  This is my poem:

My brother has autism.
It is hard for some.
It can make you feel glum.
It can be very hard to overcome.
Although life can change every day,
And sometimes you don't get your way,
Yet, with my family I want to stay.

There are reasons that it is good and bad to have a brother with autism. But it is not one of the hardest things to do and it can be overcome.

Written by Sarah Johanna, age 9 (dictated)

Friday, October 21, 2011

IEP: A first

IEP Reflection: Today, I went to my first special education team meeting ever with my own child (now age 14) in attendance. I am so very proud of her for expressing her feelings so eloquently.  She was brave and honest. 
There is much thoughtful and hard work to be done, but the goals are attainable. 
ed. note:  maybe next time, this mom will be able to fully take off her special education advocate hat and be "just the mom".  i'm learning how to let others support me in this process.  i'm stubborn.  thankfully, my friends are more stubborn.

Tuesday, October 18, 2011

mom of the year

I've wanted to be was a mom as long as I can remember; a good mom.  I had no great aspirations to be a  great wife, so maybe I should have ordered kids via mail-order.  I consider myself blessed to have known true love once and it ironically was not in my marriage.

Some mornings , when it is darkish and dreary, I don't want to get out of bed.  Rain is the absolute nail in the coffin for ensuring that pushing back the covers,  rising out of bed, and walking to the kitchen to feed the cat (the way my day starts) is going to feel excruciating.  I used to be one of those "perky" people who popped out of bed, hell I used to go to the gym at 5 a.m.  Nowadays, mentally preparing for getting the kids up, fed, dressed, and off to school is exhausting in itself.

Andrew walks out of his bedroom looking dazed and confused (although a lot less so than when he was taking meds for sleep- I wish all those drugs would go into a hole and stay away from my kids), but is usually happy.  He usually gives me a hug, or lets me hug him.  I matter to him.

On an on-line group for parents with autism, the parent of a preschooler listed the "treatments" for autism she chose for her child: OT, ABA , Cease therapy, The Listening Program, Biofeedback, GFCF diet,  supplements, epson salt bath, chelation drop, b12 lollipop, Cranial Sacral, Reiki, Naet treatment, Vibe machine, HBOT, and laser treatments. (I don't even know what all these are, nor do I want to).

I'm going to say it; you can pelt me with rotten virtual tomatoes.  Is this woman crazy?  If she is not and the above is accepted and normal, then I do win the award for the world's worst mom ever.  I think of Andrew at age 4, and look at it this list, as a whole, as legalized torture.

Nearly every single day I feel like a complete failure because I can't fix my son and he is trapped in a prison by his autism.  Some days are better than others, and occasionally I do see moments of brilliance.  Mostly, I see a 12 year old boy-man who plays with stuffed bears, isn't self-reliant enough to walk to the end of the street and back (that is with 100% assurance he will come back), and who gets *very* upset about things typical kids don't.  He is also a boy who loves his mother to death and smothers me with hugs and cuddles.  Frankly, I don't know where I would be or what I would be without that.  That's a pretty poor self-reflection of me, an alleged grown-up, as a mom.

Today, it was strongly inferredby a 20-something in no uncertain terms what a poor mother I was (her job is to help my kid, the hormonal, grumpy 14 year old, and she wouldn't be here if my kid were neuro-typical).   Those may not have been the exact words, but they stung.  I am not getting into a battle-of-the-wills with a well-intentioned but immature young woman who is closer in age to my kids than me who has never spent a moment living with autism or a child with a disability.

It doesn't matter how hard I try, or what I do to follow through on behavior plans.  With ironically amazing consistency, when my kid is pushed, she lashes out.  I have cuts on my forehead and bruises on my mid-section to prove it.

At the end of the day, I am a single parent walking this road alone.  Thanks to my small but loving village, there are occasional moments of respite and kindness.  But, this is my life and it is lonely.  It's not just autism and special needs.  There's always more to the story.  But this blog is my story and I won't pretend every day holds a miraculous moment.  Finding joy takes work, but the kids do do things to make me smile.  They are my life.

My professional work is amazingly fulfilling in the moments when I help a kid. Mostly, it's paperwork and fighting, sitting in long meetings and hearing parents' sometimes voice unreasonable demands to school staff.  Conflict seems to be my middle name.  Of course, clients need to make the decisions they feel are best for their kids, I don't know better.  However, I do know when they morph from being viewed as loving parents to unreasonable parents who expect schools to do unrealistic work, for instance, to make a child with autism be able to happily tolerate loud, long events.  Perhaps I am a bad mom, but two years ago, I accepted that my son required specialized programming that would never again put him in a loud, long, assembly and that he won't (and can't) master that real-life skill.  I'm okay with that.  Does that mean I don't care?

Tomorrow is a new day and perhaps the sun will be shining and some fairy dust will have been sprinkled on my weary soul. Today, the sun disappeared back into the clouds, I had my heart broken by someone who was supposed to support me, and put together, in part, by looking at pictures of my kids and snuggling with my old cat.  Maybe the problem isn't autism or disability, maybe it's me and has been all along.

Thursday, October 13, 2011

"Why do I have autism?"

"When did I get autism?"
"Why do I have autism?"
"Why did you become an advocate? Because of me?"

Talk about a way to make a mother's heart burst with pride, swell with joy, and ache with sadness filled with hope, all at once.  The real, meaningful conversation about autism, completely child-directed, was an hour of some of the most intense connection I have experienced with my son.

When your child for so long has spent a great deal of time living in his own world, a place which feels safe to him, where weather and bears, calendars and Presidents,  make him happy, you wonder if he even could understand that he has this neurological disorder and what it means.

I learned tonight a lot about what it means to Andrew.  He couldn't quite grasp that he was diagnosed with autism when he was two, but that he has always had it.  I explained it was part of who he was, kind of like the color of his skin.  In a gentle and simple way, I told Andrew that having autism didn't mean there was something wrong with him; only that it affects how he learns and feels.  We talked about how kids with autism sometimes have a hard time talking to other kids and that school can be hard if there are too crowded and if teachers don't help kids in the best ways for the student.

He took it all in.  Maybe because he is finally in a place where he can access these feelings and questions (having a night alone with Mom helped, too).  He asked for some hugs, seemed to seek out and enjoy hugging his big stuffed bear, he seemed at peace with what had been said.  He also seemed to understand it.

Finally, the question about my work, since he often overhears me say I chose to do this work because of him.  I explained that I learned a lot about helping kids go to the right school for them because of him.

For the record, this is his story. We tried the school district's way, then we augmented it, subsequently determined it was not working, enrolled him in a therapeutic private school, pulled him from that school because of unnecessary restraint, brought him back to the public school setting with a 1:1 aide, and, fast forward to the recent past, tried a school with ABA methodology which wasn't the right fit, and, finally, found a program which seems pretty perfectly tailored to his unique needs.
I went to trainings, took classes, went to school, learned from and studied under seasoned special educators and advocates, and realized somewhere along the way that not only was I good at both advocating for children and training parents and providers, but that I loved it.  I always tell my children that helping kids is the best job in the world.  Tonight, I told my son he, along with his sisters, is my inspiration, and that I was so proud of him.

Perhaps I am deluding myself into believing he "gets" more than he does.  All I know is that my child with autism did something I never thought he was capable of doing.  He surprised me.  He brought me  joy.  Tonight, I am at peace with autism, and I am so in love with, and in awe of, my little boy.

With his bears, which make him happy

Ed. note:  Please leave a comment and let me know you've "visited".  Welcome to our chaotic, but loving and fun, corner of the world...

Sunday, October 2, 2011

An Andrew Note

Nice Email (about mommy)
Mommy is very nice and she takes care of me
Mommy and Carol are very nice ladies are are the brown advocates and they take the best care of Me
Mommy and Carol do snuggles and hug me
Mommy and Carol are the best people and prettiest and nicest people

Mommy and Carol say we love you
Mommys favorite boy is me
Carol calls mommy her daughter
Mommy and Carol keep me safe
They get me good stuff
Mommy loves the bears and so as carol
Is this a great email?
Mommy and Carol help kids and love kids
Mommy and Carol think moms are special


Ed. note: Andrew enjoys writing ridiculously cute emails to friends.  Typically, they are about food.  Sometimes, they involve places.  This one involves his favorite bear, Carol.  He doesn't seem to believe the "real story" I bought her at Filene's @ the Burlington Mall right after Christmas 2004 for the low price of $5.99.  In Andrew-world, she's a 63 year old "special education advocate-helper" who works for/with me.  It's silly and goofy, as Andrew's play skills fall many younger below his chronological age.   But, man, does this make me smile.  He is thriving, and feels happy and feels safe here.  That is worth all the challenges. 

I love you, Andrew!