Saturday, December 10, 2011

Holidays

With the holiday season in full swing, I want to ask if you'll keep your heart open to the other one percent of us out there, the autism community. Like you, we will be out-and-about during this busy time of the year.  It is my hope that when you see us, you keep your comments, suggestions, and criticisms to yourself. 

How will you know me?

I am the boy with hair so long I look like a girl. Sensory issues make haircuts painful for me and my Mom is willing to pick her battles.  Hair is not one of them. 


I am the little girl in a spring cotton dress when I need to be wearing winter clothing, but I cannot stand winter clothing.  Trust me, Mom makes me wear a coat outside, so don’t remind her that my dress is wrong. She knows.

If I am verbal, I might speak in a monotone voice and repeat lines from my favorite movie or TV show.  If I cannot speak, I might look past you, or reach up and touch your mouth as I try to understand why mine will not work like yours. I mean you no harm, I am trying to understand my world and how to make it work. I might stim, pacing back-and-forth, back-and-forth. 

If I am on the higher end of the spectrum, I might amaze you with my knowledge of the calendar and presidents, yet I cannot answer you when you ask me what I want for Christmas.   You know what?  I don't want anything.  I want to be with those who love me, have a calm and predictable day, and see my mom and sisters happy and calm.  (I will, however, enjoy the m&m's in the Christmas stocking my grandma knot for me right after I was born, and a present or tow if they include a bear.  Don't tell my mom, but I'd also really like noise deafening head-phones, too.)

I might spin in circles,  flap my hands and/or jump up and down. I might carry a stuffed bear that I should have outgrown years ago.   I might need to count all the ceiling tiles in the restaurant before I can sit at the table. I may need to touch the glass window over and over and over. Please don’t tell me to stop, I really wish I could. I might talk too loud and say all the wrong things to the waitress taking our order. I might burst into tears when my plate comes because the French fries are too fat, or they are already touching ketch-up or another food item. I'll have a melt down; I'd wish I knew why it mattered too.

When my Mom takes me to see Santa in the Mall, I might rush past you.  Standing in line is very, very hard for me to understand or do. Please don’t tell my Mom how rude I am, she is dealing with enough trying to keep up with me and simultaneously enjoy my siblings sitting on Santa’s lap and talking to him.  If I have a melt down because I saw a camera flash, let it go. Keep your advice to yourself. If I am taller than my Mom and still want to see Santa, please understand that I am just now for the first time in my life able to enjoy Christmas and Mom is excited to finally see her "baby"enjoy this holiday.  When I was 3 and 4, I was unable to go into public places or even understand Santa. Now I can enjoy him and my Mom has earned the right to see me give him a high-five.  I have earned the right to shake his hand and give him a high five.

I get very excited over Hanukkah, and want to be included. I might be over stimulated by the candle flame when you light the menorah and try to touch it or blow it out. I might cover my ears thinking it is going to blow up like the fire crackers did last 4th of July. Please don’t scold me for hiding under the dining room table and trying to pull your beautiful blue table cloth off as I duck under. If I snatch every chocolate gold covered coin off the table, I am sorry.  I like to collect shiny things. Yes, Mom does think it is a shame I can’t keep my yarmulke on my head; and no, she can’t just force me to wear it.

Please understand that light and sound, touch, even hot and cold can confuse or upset me. I react to these events in different ways. I may withdraw even more. I may have a meltdown. I might stim to comfort myself. I might hurt myself or turn on my Mom and use her like a punching bag. I will never learn how to understand the world if I am not allowed to venture into it. Each new event takes time, patience, understanding and lots and lots of hard work on my part and that of my parents, and therapist. I am trying, they are trying, please give me a chance without judging me.

I am the other one percent. I am your next door neighbor’s child. I am your cousin’s child.  I am a classmate of your child’s.  I am a member of your community.  I have autism. I am not disabled; I am differently-abled.  


I am not a tragedy, I am a person. Not understanding the difference is a tragedy.  Just think how you would want to be treated, if you were a part of the other one percent.

Wednesday, November 30, 2011

villages and autism

I know it takes a village.  In my work, that's a lot of what I've been providing to families who need them, this week in particular.  However, I've been lax to reach out to my own village at a time we could use some kindness and good/better karma directed towards our little corner of the universe.

This autism-heavy week has been a stark reminder of the hell brought on by what this disorder can do to my kid.   Many #youmightbetheparentofachildwithautism quips were batted around in the past week by me and many others .  That  light-hearted back-and-forth was a welcome diversion from what autism really exists as in our home.

Reality sunk in on Sunday after I had what seemed like really awful heartburn (having only experienced once before this sharp, searing pain) and someone mentioned gallbladders.  Not heartburn, after all.  Turns out my gallbladder and I don't get along so well and it should come out.   As if I have time for that.  A cause? Stress.

Today, Andrew's laptop screen was broken during a power struggle/behavior/meltdown.  This is the second broken laptop in 4 months.  In fact, this was the laptop that replaced the other one that got thrown on the hardwood floor during a similar tantrum.

The pieces of the puzzle which is Andrew aren't fitting together very well at all this week.

He's 12, a boy in what is becoming shockingly more and more like a man's body.  While his bears have brought him great joy and comfort over the years (remember, he doesn't have functional play skills and even could care less about video games, oh how I wish my son would play a game on the Wii like other boys his age), nothing brought him peace tonight.  For seven hours, with short breaks, he was a ball of anxiety, uncomfortable even with my touch or reassurance, which is not typical for him.

He was able to say, "I've been giving most people an attitude recently. I hate lots of people."  My heart broke.  So many people love him, yet he knows (and now names) people he views as having abandoned him (in his mind, because he's autistic).  That's his new "out, by the way.  When the behaviors happen, he maintains, "I'm tantrumming and not calming down because I am autistic".  This drives his older sister crazy; he drives her completely nuts in general.  I feel badly for her, being the older sib of a child with autism must be so damn hard.

As a mom, I feel paralyzed.  Not a little unable to help, but a lot unable to even get through to the boy who usually loves to snuggle with his mom, make brownies, or have endless conversations about the complex, intricate lives of the many bears, Build-A-Bear and others, who live here.

A question he kept asking over and over again today was new. "Are you and Dad every going to get married again?"  I told him we were not going to get married to each other.  Then he wanted to know if we would marry other people, have more kids, and, by the way, would they have autism just like him.

My little boy, not so little as he is taller than me, lies next to me, a bear in his arms, a medication for anxiety and sleep in his body, a prisoner to autism and to the hellish chaos it creates.  Tonight, fully recognizing all the things I have to be thankful for and that others have many more challenges, I mourn for the boy I thought he would be and commit to trying to better understand and accept the boy he is. I pray for strength for him; as I also pray for strength for those around him.

He needs a village now, whether he wants to admit it or not.  His sisters and I could use one, too.  Hopefully, tomorrow will bring Andrew some peace.

Tuesday, November 22, 2011

Giving thanks

Today, I am thankful for friends who are my chosen family, children who give me purpose, bring me joy, and who I love more than life itself, work I truly enjoy (along with some really wonderful clients who I feel blessed to also call friends), and a village who envelops my family in caring, kindness, and strength.

Friends, however few, are honest, fun, compassionate, giving, and even inspirational.

In a year where I thought I had found my faith, only to lose it again, I give thanks to God or whatever greater power has existed, and hope she/he comes back into our lives.  I give thanks to the good people at our church, who offered Christian love and support during a very tough spring/summer and am glad my kids made some special friendships there.  

I especially give thanks for the moms I know who show me every day, in small and large ways, how to be a better person.  I'm still learning and am beyond impressed by what I get to witness every week; moms being caretakers and most times taking good care of themselves, too.

This year, I am thankful to be in a position to help others, the place I lived in for many years pre-2006.  It gives me a sense of purpose to support others, just as others have supported us when we have needed it.

Finally, I'd be remiss to not to be thankful for the very special kids I work for and with, along with some very talented educators.  I am inspired by children who overcome such adversity and by their parents who only want them to be happy and succeed.  I am fortunate to be able to earn a living helping children thrive.

Happy Thanksgiving, friends!  May you be as blessed as I am.  My hope is that we all, me included, will be able to realize that on even the not-so-good days that inevitably occur in the cycle of life.

Saturday, November 19, 2011

Little People

Sometimes, you get to play hooky from all the household chores, sit down on the rug and play with your kid.  At 9, Sarah still has an amazing imagination.  We have loved to play with this set of Fisher Price Little People, circa 1978-ish, my set from my childhood, over the years  The airport, the place, the hospital, camper, house... it is a blast to play with.  Coupled with our "bucket of ponies" and some of the other few toys we still have, Sarah and I had an awesome afternoon together.

Thursday, November 17, 2011

Grace happens

This morning, when it was still pitch black outside, I walked to the back porch, fleece on, and took in what the week had been, and mentally prepared myself for what was going to be a challenging day.  Breathing in the cold, fresh air, I stood, alone, and enjoyed watching the beginnings of the sunrise. 

The morning seemed, in advance, a mountain to scale, not knowing how high we would climb, or if we would need to descent before reaching the peak.  In any high stakes meeting where people are counting on me, I do feel the weight of the world on my shoulders.  I knew we had the right evidence and that I had produced high-quality documents.  Without resolution, today could have lead to a not very fun week after Thanksgiving for many people.

The meeting was painful only in the sense that some of the people there did not want to be there and seemed so uncomfortable.  But, folks needed to hear me out, and did so respectfully.  Afterwards, we needed to hear them, and did so respectfully.

In a moment of grace, it became clear we were both looking for the same thing.

It makes me happy to know a student will have a chance to heal and learn;  I was able to play a small role in making that happen and that is a great "paycheck", the  thank you from a grateful mom.

Sitting here in the calm, feeling confident, I am chatting with my son who randomly gives me kisses on the top of my head, enjoying some leisurely discussion with my daughter, and even snuggling up with the cat.  Tomorrow, I'm taking a day off from work and going to do something nice for myself.   A hike sounds like just what the doctor ordered, or maybe just a walk around Horn Pond.  Later, my teenager can meet a potential new friend and bond over social justice issues and a love of animals and all things not mainstream.

I am so very grateful for my friends, my children, and my village.  Furthermore, I am grateful that I get to do work I love and *maybe* change kids' lives along the way.

Saturday, November 12, 2011

Guest sib post by Em (11)

      As you may recall from my earlier post I said that Andrew and I aren't getting along. But a lot of things have changed since then. Andrew and I get along very well now. I probably spoke to soon, tomorrow he might hate me, you never know. Even if he does hate me tomorrow I will love him just as much as I always have. 
     I don't like to say he has Autism because Autism can mean so many different things, so I like to say he has "Andrewism". "Andrewism" can make our life very challenging but very rewarding at the same time. He might scream all the time but he is one of the smartest kids I know.
     Andrew's Savant skills have made him the smartest kid I know. If you tell him the year and day you were born he will tell you the day of the week you were born. Did I mention this was he was 5. In the end Andrew is the only brother I have and I wouldn't love him any more if he didn't have Autism.       


-by Emily, Age 11
      

Thursday, November 10, 2011

Blog

During a recent lunch date with two friends who have children on the spectrum, I remarked that the  "autism mom" community is the most divided I have ever encountered.  Especially when you have younger children, there is so much emotional baggage you still carry.  There's the "blame" question, which is quickly followed by the "cure" question.  I am not a card-carrying member of the neuro-diversity camp, nor do I believe that vaccines caused my son's autism.  My journey has been one of accepting the diagnosis and therefore accepting and seeking out the best mainstream services to help him, foregoing a search for how to cure him.  It's been bumpy, always two steps forward, one step back; that much I know we all share in common.

I'm not politically correct and I don't endeavor to be.  I am not as gracious as my friend Susan Senator, nor do I live a financially comfortable life, as evidenced in other autism blogs I enjoy reading (ie: Diary of a Mom).  I don't know any other autism mom blogs written by single moms.  There's a lot of us out there; I wonder if those with the desire to write simply don't have the time or energy. 

As more people read my blog, more comments get left.  Some are gracious; others not.   Gotta love anonymous comments.  I expect the cruel ones; I even shrug them off.  However, I can't help but wonder who would bother to take the time to read what I write and leave a nasty-gram.  Isn't the opposite of love indifference, not hate?

I continue on my journey parenting a 12 year old young man with autism and three girls, one a teenager who acts, well, like a teenager.  Every wish my mom ever had when I was a grumpy and hormonal teenager (ie: "Just wait till you have a daughter like you!") has come true,  I am happy to report to her.

I choose to do work to help other children with disabilities access the programs and services they need, oftentimes opposite from what their school districts have offered, and love it. Usually.

My kids are in out-placements.  My kid with autism has had so many ups-and-downs; he is finally in the *right* school for him, with the *right* home supports.  We're working on teaching him how to tie his shoes. He is starting to have conversations so long I have given up counting how many exchanges occur between him and his conversational partner.  It's amazing to witness.

If you check-in and visit us, know you won't be reading about elaborate, or even quick, vacations or expensive and/or experimental therapies.  You'll be reading words written by a (financed and old) mini-van driving mom who really does *try* to make the best out of the lemons life has provided.  Some days, they make cool, refreshing lemonade.  Other days go by with the evening a time to remind myself that the next day is a new day.  In the end, I love my little boy and my daughters more than anything, enjoy my work, and will continue to believe that faith, hope, and love exist.  But, no, I haven't made peace with autism.  I haven't made peace with being a divorced mom in my mid-thirties who may have the desire and/or ability to date when I am 50, at this rate, either.  Oh, well.

Welcome to our family's little corner of the world.  Be part of our village, won't you?

Wednesday, November 2, 2011

The public meltdown

This afternoon, I almost had one.  But, alas, it was my son's meltdown that I reference.  A trip to get what was supposed to be a 5 minute haircut turned into a near-total catastrophe.  The only thing that redeemed the experience was the fact that Andrew did end up with much shorter hair.  I won't be mentioning to him how handsome I think he looks.  I don't want to give the event any more attention than it's already had.

We've gone to the same hair stylist for Andrew for almost a decade.  We love Anita.  I would drive twelve hours to see her.  The patience she exhibits, coupled with her tremendous skill with a pair of scissors, make her a favorite of many of my autism mom friends.  Her friendly demeanor with all kids make her a favorite of moms of completely typically developing kids.  Did I mention we love her?

Armed with two ABA therapists, the process went as it has 50% of the time Andrew has ever gotten his hair cut.  He hates how it feels.  Unlike girly-girls like me who love trips to the hairdresser for the scalp massage during the shampoo alone, the experience of someone touching his head, and the sensations from the buzzer (only for "clean-up"),  make Andrew miserable.

It's different when your kiddo is 5 years old and taking a fit in public.  Andrew was little, his meltdowns less intense, and he was cute even when upset. Mostly, it's not entirely uncommon for a 5 year old to melt down in public.   Of course, people stared and many along this road made snide comments, which stung no matter how much I wished that hurt away.

It's an entirely different experience when your autistic child is 12, two inches taller than you, and weighs 140 pounds.  No one thinks he is cute.   Everyone thinks he is crazy.  I feel like people are staring at me (well, many are at least glancing at me wondering what the hell is going on), having decided I am an terrible-awful-no good-very bad mother.  I love my son.  That doesn't translate to "I love autism" and understand what to do all the time.  I wish I did. I wish all the money we and others raise for autism research felt like it was helping; that anything was getting better for treatments or that anyone was close to finding the root cause which cold lead to a cure.  Days like this, or those when he runs out of the house screaming or melting down because all the circuits in his brain can't and don't connect, make me sad.

He got through today.  I got through it, too.  Anita is an angel.  Andrew will need, and get, another haircut in 10-12 weeks.  And so the story goes, again and again and again...

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. 
#hope
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.
Then
Now
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

Hi,Friends
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

Love,
Andrew


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!

Thursday, September 29, 2011

Just a day

It's the eve of my birthday.  When you are a grown-up not celebrating a birthday ending in a "0", it is just another day.  That is, it's meaningless unless you have a calendar-obsessed autistic kiddo.  Heck, being a single mom offers few opportunities for celebration for most of us, so if my kids want to celebrate me and make an attempt to bake a cake or write cute cards, I'll take it.

For the past decade, there have been homemade cards from the kids, dinners filled with good food and better drinks to go along with the good friends, and even some generous gifts.   I'll let myself indulge in remembering a meaningful and loving birthday five years ago.   (There have been the duds, as well, those being the nights I spent home alone).  For many years, my group of girlfriends celebrated everyone's special day with a dinner out.  In 2000, my preemie baby girl was still in the hospital on September 30th.  My dear friends decided I needed some cheering up and took me out to dinner, with the night ending with a visit to the NICU. 

A meal I don't have to cook and a margarita attached to good friends is the plan for tomorrow night.  IF the (brave) sitter shows up, IF the kids don't freak out when she gets here, IF Andrew's autism doesn't blow it all.

My ex-husband has been taunting me on a frequent basis in recent weeks.  A zinger he sent a few days ago: "I am truly sorry you are lonely".  I laughed.  For what it's worth, he always stunk at birthdays, anyways.  Maybe he gave up porn and other women for the day in honor of my birthday :-)  In reality, I have more important things to focus my energies and time on than the man who hurt me, hurt our children, and finally hurt me in front of our children.

Tomorrow morning, I begin my birth day (which is not even my real birthday, but that is a whole other story) entering the world of civilized warfare that special education dispute resolution is.  I'll connect with a dear friend whose life mirrors mine, have lunch with my surrogate "pseudo-mom", check the mailbox for cards and not be disappointed the one I want to be there won't be, and hug my kids more than they want to be hugged.

Maybe the day will include good chocolate, good wine, and a Yankee Candle.  I know it will include being around the people I love the most: Julia, Andrew, Emily, and Sarah.  That, along with seeing dear friends, is really the best gift in the world.

Saturday, September 24, 2011

accepting autism

I didn't sleep last night.  Still reflecting on Andrew's doctor's appointment and the visit to his school, the sleepless night brought a realization.  No one can get what it is like to have a child with autism unless they themselves have been touched by autism, or a similar disability.  No, it's not the worst thing in the world, nor is it something which is terminal.  I totally get that many families have more challenges to live with than autism.  It's not like Andrew will die because of autism, yet in some ways it seems like a constant mourning process in concert with loving and celebrating him as I do my other kids.  His autism is never going to go away.

Who knows the "whys"?  I don't.  Was it the 5 day long hellish Pitocin induction?  Or perhaps the fact I chose one type of therapy over another when he was in Early Intervention?  Or worse, allowed him to be "screened out" of EI at 16 months?  Or the abysmal special education services he received from perhaps well-intentioned people who simply didn't get him from 2nd-4th grade?  It does not matter.

The critical comments and judgement from some people is part of the life of parenting a child with ASD. (It's amusing that a common trait of these folks is they don't live with autism or similar challenges.)  People tell me, sometimes bluntly yet often not directly, how annoying, crazy, and awful Andrew is.  He absolutely is picky, but he is also a very good judge of people.  I only want to be around people who don't judge and who love him how he is- autism and all.

This is life- it's not sour-milk-complaining.  The ups-and-downs of autism dictate what our family is able to do.  Long ago, I accepted this.  My heart breaks for a young man who deserves so much more and who is trapped in a body which has this disorder in every cell.

I've faced my share of challenges.  I've given birth to a preemie, been through an awful divorce preceded by domestic violence of the worst kind, and faced my own own health issues.  There is not a choice but to support my son and to live with the autism.  I try the best I can.  I don't expect much from others anymore as my experience is I usually ending up disappointed.   Too many people have let me down.  More importantly, too many people have let Andrew down.  I pray that God gives me the strength to love and care for my child in the best ways possible for him.

Wednesday, September 21, 2011

Happy Birthday, E!

After four shots and a physical... E started really enjoying her 11th birthday!

Her beginnings in this world were certainly dramatic.

(See below from last year):

4 pounds to 10 years


It's hard to believe 10 years ago, I was 32.5 weeks pregnant, getting dinner ready and putting kids to bed, having made plans to drop off Andrew with my mom in the morning so I could go in for a routine non-stress test. The baby flunked...

A day of tests, an expectation of a week or two hospital stay to let baby cook more, and then the specialized ultrasound which healthy babies score 6/8, she got a 1/8, which led to an emergency c-section (the "get your husband to the hospital NOW" kind)... 

We welcomed E Elizabeth (no, not named after Clifford's friend) at 8:37 p.m.. A bit loopy from the drugs and the surgery, looking at this little 4 pound baby in an incubator in the special care nursery, I could hardly believe this tiny being was here. After all, she wasn't due until November and there were no problems with my pregnancy except for the expectation of pre-eclampsia setting in somewhere around week 36/37 as it had before.

E was beautiful, her skin was dark (like mine- one came out looking like they had an Indian mom!), but she had "no meat on her bones".  Just don't tell her she looked like an under-nourished chicken as she takes great offense.  She had a hard time eating (and pumping was a disaster), gaining weight, and keeping her body temperature up.  She was the size of a doll.  So many friends sent flowers (Kim sent some before Em was born when the plan was for me to be hospitalized for a week to get her to "cook" longer), quite a few came to visit her (I have the pictures of everyone suited up in gowns to come into the NICU), and more than I know were saying prayers.  After my discharge from the hospital, my few close friends played such a special role in visiting her, even bringing me in for a visit after my own birthday dinner. Thanks, Kim, that is a night I won't ever forget.


My tiny preemie is going to be "double digits" tomorrow.  She is the kindest kid you will ever meet and brings so much joy into our family.  She truly is everyone's "best friend". 


Well, here we are in 2011 and this 11 year old is one of the most sensitive, spirited and bright, kids I know.  She and I have had such a fun summer together, and in many ways she is more like me than my other kids.  Happy Birthday, E, I hope all your dreams come true!

Love,
Mom

Saturday, September 10, 2011

A September 11th Blessing

10 years later

At 10:42 p.m on 9/11/97, I gave birth to a beautiful 6 pound, 15 ounce baby girl.  Three months later, she almost died after her heart stopped working.  She has faced so many challenges in her life.  Today, we celebrated her birthday with a small party with friends who love her.

On her 4th birthday, our country was attacked. That evening, we muddled through a birthday celebration with our close friends J and J and K and J and their baby, M.  Once the kids were settled, we adults all sat, in shock,  and watched a Presidential Address "from a secure location" on the TV in my living room.    In retrospect, I am glad to have shared such a painful day with our then very best friends.

The day after, Julia drew a picture of what she described as a "plane crashing into a building".  I still have that picture.  The comments people made/make to her which followed in the days and years were not fair.  She's just a kid.  What happened on that day is awful and evil, but it doesn't define her or her birthday.



It is my prayer and biggest hope that Julia is happy and thrives and accomplishes all she wants in life.  I love you, Julia Grace.  May you have a very Happy Birthday and a year filled with many blessings and much joy.

Tuesday, August 30, 2011

Almost twenty years later...

This is what I looked like when I started writing seriously nearly twenty years ago.  I had longer, curlier, and softer hair, a great complexion, but the same big smile.  I wrote for my friend Karen, who was then the editor of the Burlington Union, my hometown's local paper.  I think I made $35/column, which seemed like a lot of money, especially for doing something I loved.  Politics (a rabid Massachusetts liberal was I), music and concert reviews, all the relationship advice I could offer being a teenager in the throes of young love, adoption, social conscience developed as a child, church-- you name it. I wrote about it.

I'm not sure I was that good.  But Community Newspapers had awards for columnists and I won one.  It was the first commendation I received after realizing at 14, that being a singer was not going to happen (thanks, Dad, though for paying for me to record a demo tape of "All This Time"), my modeling dreams were going up in smoke as I was 5"4, a size 10/12, and my skin was brown.  The acting I did after "Ready to Go" ended up being incredibly expensive; community theater was fun, but not my thing.  I played amazing soccer as a goalie and swam, as far as in the New Englands for back-stroke, but I was never the high school, pro-type athlete.  Neither was did I experience the standard route through high school to college.  Always an over-achiever, I found myself in what no on around me, including me, would call what it was: a pretty major depression.  

Coming out of that funk, meeting a great guy/being the girlfriend of a musician, spending less time at home, working on the 1994 coordinated Democratic campaign in a warehouse in Southie answering phones for Shannon O'Brien, dating a bunch of different, and older, guys, and finding my way in the world, to enrolling in classes, and having a lot of fun. 

Then, I got married.  I had babies.  Life changed.

Life now is defined by being a mom, and specifically about parenting a child with autism, and another with other, more taboo disabilities. It's a lot of fun to read my old clippings, 4 years worth, when my writing was definitely funnier and possibly more fluid.  

It's a kind of coming full circle.  Being nominated for awards for my writing, signing a book contract (which may or may not ever see the light of day, but a publishing house a year ago thought it worth pursuing).  I've worked a lot to be able to tell stories from my life in a way that does not exploit my kids.  It's hard to write about marriage, divorce, dating (from falling in love, hard, to hating someone's actions, some abusive, others just mean), to starting over. 

We all have demons, BUT we all have accomplishments.  Through writing, I can tell the stories of my life, and of my family's life, and maybe make someone laugh, feel emotion, or just walk away from the paper or computer screen thinking about something they hadn't before. 

Happy reading!

Tuesday, August 23, 2011

Taking stock

Over the past week, I've spent a few dozen hours *sanitizing* this blog.  It's an incredible honor to be nominated for awards from online special education parenting communities. As well, a national domestic violence program has asked if I would agree to allow publishing of an entry on their website and in their newsletter.  My blogging started out as basic, brief "what I did today" posts, ways to keep in touch with friends more than anything.  It has evolved into a well-written and coherent account of the joys and challenges of being a single mom with *spirited* children.   Recurring themes include trying to balance a job I both love and hate, my faith and related love-hate relationship with God, female friendships and how integral they are, starting over after experiencing different forms of domestic violence in not one but two relationships, the prison of autism my son and our family lives in, special education and how it truly is a civil right, health and healing,  and the ways I keep myself sane, *usually* with a smile on my face.

Use of first names will become commonplace; free speech is constitutionally protected.  It is somewhat amusing that people who have behaved badly, or unkindly, wanting to remain anonymous and think that is their right.  No one has the right to be a bully.

It is thanks to all of you that my writing is considered meaningful, that my journey parenting kids with special needs, trying to move beyond relationships where I was physically and/or emotionally battered and knowing that, after five years, I am committed to being healthy and single and never again putting my faith in a partner, is considered relevant.  The revenge fantasies have been mostly played out (a la "Before He Cheats" and "You Oughta Know"), but no healing has come from them.  It doesn't change feeling enormously lonely, something that I have never pretended isn't a day-to-day struggle.   Who wants to be alone, especially parenting four amazing, but challenging, kids?

Simply put, my kids get 100% of my emotional energies.  May everyone have the opportunity to share their stories, in the hopes they could help someone else heal, or just make it through another day, by knowing they are not alone.  That is my hope of what this blog can provide its readers.

Wednesday, August 17, 2011

it takes a village to pay it forward

Two principles integral to my life are "it takes a village" and "pay it forward".  Not just words; these are concepts to live by.  This week has provided the opportunity to support a family starting to heal from domestic violence.

Domestic violence within a loving home filled with children just seems so wrong.  I remember.  It is 2 a.m. on a cold winter night; the doctor covering for my PCP returns my page.  In a small voice, I explain that my husband had pulled my middle finger back so far it was grotesquely bent.  The male doctor non-chalantly, and perhaps a bit annoyed at being woken up from his beauty sleep, suggested a trip to the emergency room.  I didn't go, but I should have because the episodes happened again... and again.

There have been so many incredible and generous people who have been part of our village, providing love and support in many forms to my children during a very tough few years.  It seems only natural to pay that kindness forward, to a family led by an amazing mom who has no idea the strength she does have.  Holding her in my arms after dropping off some bags of food, through her emotions and tears, she swore she wanted to write thank you notes and couldn't imagine that people cared this much. 

I do care.  My family cares.  My friends care.  My clients care.  We will help her through this by providing some of the physical "things" she needs, but also listening ears when and if she wants them.  I've been there, even now he tries to cause me pain. Some days it works, most days I just ignore him.

What is a village? It might be extended family, friends, or a faith community (church/temple). But, often times, when those supports don't exist or are stretched thin, it can include colleagues and sometimes folks who want to stay anonymous.  (I remember "Santa Claus" showing up on my doorstep in 2007, when I had no money to buy gifts for my kids, and when their stockings were filled with M&M tubes, ponytail holders, and 99 cent bottles of nail polish).  Three years ago, dear friends offered to serve as trustees so that I could buy property and rebuild my credit as a single person, not attached to my ex-husband.  That is obviously a large offering, but the small things (ie: food, a funny and/or inspiring card, rides, childcare, or simply a listening ear) meant just as much.

What does it mean to pay it forward?  To me, it signifies being the recipient of a good deed and recognizing and honoring that by practicing random acts of kindness to another.  The world survives, and our communities thrive, when folks help one another.  In the circle of life, sometimes you are able to give help, sometimes you need to learn how to accept help even if it goes against every grain of your soul, and sometimes to keep your sanity in-tact you choose to save your emotional strength for those you love and only them.  But we are never in the same place permanently, those of us with empathy, at least.

My nine year old and I discussed donating money and goods to families who are going through tough times.  She may be single-digits, but she is wise beyond her years. She remembers her father smothering me with a pillow, as well as the depression I went through a year after that episode. We figured out that simply smiling at someone who might be having a bad day at Horn Pond or Dunkin' Donuts is a way to make the world just a tiny bit brighter.  It is just part of our personalities to be friendly and offer a smiling "thanks- have a nice day" to everyone, including those who bag our groceries and sweep the floor.   Likewise, I typically make eye contact and say hello to those I pass on a walk or hike.  Common courtesy, not being fake, never causes harm and usually encourages good.

Another family is going through something similar to the the life-changing, mind-numbing, and downright cruel experience we lived four years ago.  There is no melodic terminology to describe that kind of pain.  Simply put, it sucks, as well it can very well suck the humanity out of your soul.  Hopefully, we are able to "pay it forward" and help be part of the village of people who can help lift the spirits of folks who are going through the darkest of dark days.


Sunday, August 14, 2011

A letter to my son

August 14, 2011 @ Bertucci's
Dear Andrew,

Today is your 12th birthday. (For the record, it's partly sunny and 75 degrees out.)  I think you are the bravest and hardest working boy in the world.  Your autism holds you back sometimes, but it's also brought so many fun and wonderful things to our lives. Some of your interests, aka obsessions, have included: the most amazing drawings of houses a preschooler can make, home-made calendars, Presidents, Blues Clues, Weather forecasts and, of course, Build a Bears.  You have an amazing gift: memorization.  You can tell someone  born on April 4, 1967, what day of the week that was without blinking.  Pretty neat, indeed.

Some of the things that make me smile when thinking about you include: the Buzz Lightyear tent with a bean bag in it to sleep on, stuffed animal forts, you saying "I love you" back to me for the first time when you were 5, the purple tutu, and many tender and fun moments with Emily, Sarah & Julia, too.  Lots of squishy hugs, body socks, brushes, lotion, and your beloved bear hug vest have all brought you peace when your brain was not being kind to you, making you feel like you were crawling out of your skin and causing you unrest.

I know there is a lot you can't do now, and maybe won't be able to do. Some are even things you used to be able to do.  Have friends, going to a regular school, or your prom, or college. But, there is so much I know you can do and will do.  Part of me wants to scream, "Screw autism".  It doesn't define you  anymore today than on the cold February morning the neurologist at Mass General officially gave you the diagnosis. I am very grateful  to the many wonderful people (the list of Andrew's "people" throughout the years would go on for pages), who have helped you along the way.  Your sisters love you, despite the sometimes unflattering and unkind behaviors.  Our friends love you and accept you for the quirky kid you are.  Your dad and I love you to the moon and back.

Today has been a mellow day, too mellow if you ask your sisters, but it was just right for you.  You were a superstar at dinner, full of smiles, and I know how much you enjoyed your cake here at home. It brings me so much happiness to see you happy.  Thank you for all you give me.  You are my favorite 12 year old in the world!

Love always,
Mom

Wednesday, August 10, 2011

Advocacy

In the course of designing a professional website, I wrote the following about my practice. 



In 2005,  I began working as a special education advocate.  I am the parent of four children, three with Individualized Education Programs. Two of my children have complex disabilities (autism and mitochondrial disorder/emotional disability/medically fragile); both attend private day schools.  I work mainly with preschool and elementary students, with a small group of middle school clients.

*Please note that I do not work with high school or transition-age students (14-22) as I don't feel I have the training, knowledge, and expertise to represent their needs fully and with the same high level of skill I have with the "younger set".

My practice successfully represents children with mental health diagnoses, both as their primary disabilities, and also as co-morbid diagnoses to autism spectrum disorder.   I have received extensive training through Wrightslaw and have served as a trainer for both the Federation for Children with Special Needs and the Early Intervention Training Center.  I have worked as a consultant at the Early Intervention Training Center, the Massachusetts Department of Public Health, and at the Federation (one contract included designing and assessing a workshop for families of kids transitioning out of Early Intervention). 

In a typical month, between 15-25% of my caseload is comprised of pro-bono or reduced fee cases.  I believe every child deserves the support of an advocate and that protecting the special education rights of children is truly a civil rights issue. That said, it would be a good day when my services would cease to be needed.  The system can and should work better and parents should feel confident advocating for the education needs of their kids.   I'd love nothing more than being about to work in a classroom or play with kids for a living.

Some of the major accomplishments of my career have been securing, twice in tandem with a special education attorney, and twice working alone, private day school placements for children with autism.  Filing hearing requests to assist parents and helping support them at pre-hearing conferences and in settlement talks are unique skills I bring to the table as an advocate.  I have negotiated settlement agreements for three clients after pre-hearing conferences.  I possess the knowledge of the law, complete familiarity with my client's case, and the people skills to obtain desired and fair outcomes.

I support parents in gaining more advocacy skills and knowledge of the laws and regulations governing their children's special education services.  If and when I or another advocate or attorney are no longer in the picture, it is my hope parents are able to advocate for their children effectively and without being afraid to speak up.  I believe that creating positive and respectful partnerships between parents and school teams leads to best outcomes for children.

I provide consultation to families in the form of record review, IEP review and response (ie: IEP Rejection letters),  classroom observation, and communication with the district on behalf of a family to ease some of their day-to-day stress.

Tuesday, August 9, 2011

A moment of grace

A commonality in my posts is the timing; I tend to write after my son goes to sleep.  When he is at peace, wrapped up in a lightweight blanket, window open with the gentle breeze blowing his now too long hair, it seems as if autism is far, far away.  Hearing the rhythmic breathing and being able to give him a kiss without hearing the loud piercing of a scream or feeling him pull away when I try to hug him makes my heart sing with joy.

Sadly, the moments of real connection and peace do seem to come, at least in recent months, only while Andrew is off in dreamland.  All his obsessions  (Little People, Blues Clues, Buzz Lightyear, Presidents, House/Architecture, Birthdays, Weather and Build-A-Bears) over the years, during sleep, probably inhabit corners of his mind. 

In the darkness, I reflect upon his journey.  I remember the moments that brought tears of joy to my eyes.  The first time he talked- really talked- when he was 3.5.  The first time he said goodnight and I love you.  The first time another child asked him to play.  The first time he made it through standing on the stage with his class during an assembly, singing and reciting a poem nearly in-sync with the other kids.

Having relationships with other autism moms is both a blessing and a curse.  Today, I cried hearing every other parent in the room talk about, in different ways, how their child talked too much, or talked about things that seem so grown-up.  My son has no friends- he wants no friends. He doesn't talk very much.  Finding out the details of his day is a bit like pulling impacted wisdom teeth as he only answers yes or no questions about the learning he has done.  Will he get to where those other kids are?  Will I get to the place my fellow moms are in- seemingly handling it all with grace?

As sleep threatens to close my eyes, it seems like a moment of grace and respite to enjoy my little boy, about to turn 12 and not so little anymore.  I will sleep peacefully tonight.

Thursday, July 14, 2011

I hate you, now take me to the mall

Teenagers.  Autism.  Which one is more challenging? And let's not even go there- "there" being that I will have an autistic teenager under my roof in a year's time.

People keep recommending the book titled in this post.  Barnes and Noble here I come.  Teenagers are people, too.  They deserve respect.  I get that.

I am, however, a fairly newbie at the "parenting a teen gig" and my hair is quickly getting grayer by the day.  My teen seems to have the ability to control her actions, including those which annoy the crap out of me.  In contrast, my kid with autism doesn't seem to be able to control all his actions, so maybe it is a tad easier to accept those. 

This blog tends to be about the not-so-normal (like autism) parts of my life.  Now, I am probably going to be writing about what everyone goes through (and I hear survives)- raising a teenage girl without fleeing to a desert island or putting her on a plane to a similar place.  Wish me luck.  Lots of it.

Monday, July 11, 2011

A very smart nun once said...

"People are often unreasonable, illogical, and self-centered.  Forgive them anyway."
-Mother Teresa

Someone shared this with me tonight and it hit a big nerve. Beyond the obvious (obvious if you know I lived the first months of my life in Mother Theresa's orphanage in Kanpur, India), it holds meaning and advice that most of us mere mortals should recognize and follow, but don't.  Having myself been guilty of all 3 of the above at various times, I certainly hope people have forgiven me when I have behaved badly.  At some point, you have to work, and I mean work hard, to forgive if you have any hope of moving on.

People wrong each other all the time.  Families fight, couples bicker, people get into random tiffs with fellow customers at the grocery store or with a manager at a restaurant, yet we all move on and get up the next morning because we have to, not necessarily because it's always easy.  I have always had great admiration for couples who live by the mantra of never going to bed angry with one another.  As anyone I have ever been in a relationship with can attest to, I could never do that.  I could, and should, learn that skill if I am ever blessed enough to be in a safe and loving relationship again.

In a strange somewhat related twist, on an autism list I belong to, a single mom posted about her challenges with dating while parenting a fairly young child on the spectrum with intense needs, and the fact she wasn't sure her boyfriend could handle her devotion to her son (he wasn't sure, either.) Knowing many married moms are in this particular group of parents, and as a divorced, single mom,  I decided to reply, touching on my own experiences. The thoughts flowed to my fingers as they touched the keyboard, with a fair amount of tears streaming down my face. (Ask my kids, I cry at the end of every movie- I wear my emotions on my sleeves).

I dated someone who seemed to fit the bill perfectly, if the bill were to read as follows: "Single mom seeks partner who intimately understands autism and knows how to interact with a child with autism". (I wasn't seeking, but that's a whole other story).   He is the sib of a brother with pretty severe autism, now of course a grown adult, and had lived "it" his whole life, until he went off to college and then moved across the country.  But, not necessarily because of my child's autism, I had moments of being illogical, unreasonable, and self-centered in the context of the relationship.  He did, too.  Yet, he met the four criteria I required of a partner: great emotional connection/friendship, great physical connection, shared spiritual values as we had gone to church together for years, and, last but not least, acceptance of my son and his autism, but also acceptance of me as the mother of an autistic boy.  My son loved him.

Yet it is exactly the traits Mother Theresa spoke about which still, years later and not proudly on my part, at least, leave both of us bitter, angry, and still emotionally involved.  I mean that in the sense that I know he still checks up on me, reading my blog, trying to "one-up" me by making claims that aren't true, knowing my schedule and rather boring life by asking  mutual friends and acquaintances or, and this is the worst, calling names.  I still have these random moments when I remember something exceptionally good about our time together.  There are the equally random moments where a total stranger calls me asking about him because of events in his current life.  (That's happened no less than three times in the past month alone).  My kids still see his kids around where we live.  We still drive on the same main roads and pass each other.  Yet, because we act illogically, unreasonably, and are self-centered in some ways (including not being able to fully own our own mistakes, that's something I've been able to do, at least, but he hasn't), the relatively brief romantic relationship of one year, which developed after 8 years of friendship, still stings to this day.  We still seem to cause the other enormous amounts of pain.

Therefore, in responding to this mom, conflicted about how to date with a little one with autism and wondering where her loyalties should lay, I shared that, for that year, I tried to balance both, the relationship and the autism.  In the end, I failed miserably at both in different ways.  I lost someone who I was very much in love with and who I believe loved me, and I lost my way in advocating for what my son needed, at a time (remember, his parents just split up and he was now trying to figure out why mom had a boyfriend and why dad had a girlfriend and why he had two houses) that was challenging for him.  In the end, my inability to be both the partner I wanted to be, the mom I knew I could be and wanted to continue to be, the stress of raising three spirited girls, and trying to keep us in the only house my kids had ever really known, just broke me and my spirit.

I give huge kudos to those parents of children on the spectrum who have managed to stay married.  I have ginormous respect for those in particular whose marriages have remained strong, loving, and happy.  Of course, there are all of two couples, both friends who moved cross country to the West Coast, who fit this bill of all the autism parents I know well, either personally or through work.  They must have learned along the way to be reasonable, logical, child-centered, and most of all forgiving.  

That Mother Theresa was a pretty smart lady.  It blows me away to know she probably held me in her arms when I was an infant.  I will work on the forgiving piece and can only hope others work on it, too.  But, don't expect to see me on Match.com or Eharmony anytime soon.

Saturday, July 9, 2011

The gift of good food

Yum



I can't cook, at least not well.  Perhaps the only "perk", and I use that as a relative term, of having a sick or hospitalized family member is that people bring you food.  A long time ago, I learned that when people ask "what do you need?", it's best to give them a real answer and not answer with the typical passive-aggressive "we're fine" or "whatever works for you".  I have a bunch of kids, so people to hang out with them is always a welcome offer.  Food is accepted and appreciated, despite the ironic twist that my best efforts for my friends who have just had babies or need a meal for some other reason usually involve take-out Chinese or pizza.  Sorry, friends.

Doing the work I do, I have been fortunate to meet some pretty amazing families.  Many of their kids have needs similar to my kids, so in doing my job advocating for services, I oftentimes know intimately what these kids and their parents lives are like.  While boundaries have sometimes gotten a bit too fuzzy, I consider many of my clients friends, especially after knowing many of them for so long.  After all, I am a long-time believer that moms of kids with special needs need to stick together because our other friends who are parents of NT kids just don't understand a whole lot of what goes on in our lives.

One of the districts I most enjoy working in is Needham. An upper-middle class suburb about 20 miles from home, I maintain a positive and productive working relationship with the special education team (and the amazing Elementary Sped Director) at one of the elementary schools.  I collaborated closely with them to find the right placement, ultimately, for a client.  This little guy has much in common with my son.  Likewise, his mom and I have much in common, including our philosophies about services and the fact we are both writers (although she is a much, much better one than I and gets paid to teach it to college students).

I chose to share my kid's current struggles with her as part of a "mass email blast" to our friends, family, and selected clients and colleagues, asking only for prayers and good wishes, sent out after my kid went into the hospital.  In response, this friend offered to cook a meal or two.  (In the meantime, her daughter offered to come and hang out with my little girls for a few hours; a huge success for all).

And cook she did!  Both the vegetarian casserole pictured above (layered zucchini, onions, tomatoes, potatoes, garlic, and some cheese) and a chick pea curry with potatoes and carrots with brown rice, are delicious and HUGE hits with my kids.  Emily is currently operating as a vegetarian (5 months and counting...) so it did not surprise me she loved the food.  Sarah, however, is uber-picky in what she eats and tends to not prefer the healthier options, and she too loved this food.

It's comfort food.  I never understood that term while I was growing up.  There was a period post-autism diagnosis where we had 4 kids under 5, a bunch of medical complications from Julia's mitochondrial disease, the aforementioned son with autism and a zillion hours of services and a many medical appointments and heavy-duty tests,  a preemie, and other stuff.  People from church brought over food often.  (My dear friend Lynda was one of them and I still have fond memories of her chicken noodle casseroles and cherish her casserole dish that we still have, since she passed away a few years ago.)  Afterwards, the givers still somewhat a mystery to me to this day, we were given a $500 gift certificate from our church to a restaurant delivery service.  People cared, and one of the ways they showed it was through providing us with meals.  But, then, I was too busy, frazzled, and probably sleep-deprived to appreciate the comfort factors of good food.

This evening, mentally exhausted from both a hospital visit and a 35 minute screaming tantrum courtesy of autism, we sat down to eat the harvest (literally it looked and tasted fresh from the garden) that my friend/client's mom prepared for us.  The tastes are different from the stuff I usually make (pasta and sauce, meatloaf, chicken, green beans, etc.), but it was so yummy.  I think I enjoyed it even more since I know it was made with love and care by a good person who drove to and from Needham, not once, but twice to enable the baby-sitting and cooking to occur simultaneously.

I know, this post is probably boring and maybe about something other people, with whole, functional extended families and better support systems, have happen all the time.  In fact, we have been blessed to be the recipients of casseroles and dinners from our church in recent months as part of their congregational care-taking ministry, all of which we have appreciated.  Somehow, today's events enlightened me enough to acknowledge that providing food is a very important type of ministry friends can provide to one another during difficult times.  I am so grateful that this village is surrounding my kids and I with a lot of love.

Monday, July 4, 2011

When you can't make peace with autism

Fair warning, lots of un-PC comments ahead.

It wasn't too many years ago that I thought autism was just part of my kid and something to be embraced, just like any other "quirk".  I embraced the "neuro-diversity" movement.  This was akin to thinking that Andrew's autism was a positive gift.  Of course, this was before my kid started having violent behaviors, became completely dysregulated, and seemed to be crawling out of his own skin more often than not.

The director of a local autism resource center completely called me out when I posted some "autism is just peachy and a blessing" status update on Facebook. (The Internet- this is how autism moms connect, outside of school pick-ups and drop-offs and sitting in the waiting rooms of Speech and OT clinics).  It was a total reality check that she, mother of an adult with autism, knew so much more than I did, and she knew I was living in a deluded reality about the "gifts" of autism.

I adore my friend Susan Senator, author of Making Peace with Autism and the Autism Mom's Survival Guide.   I love that she has supported so many of us by sharing her family's experiences.  I am envious she has a supportive and loving husband who has been a partner to her in parenting their son.  But, the older Andrew gets, the less at peace I am with autism, and the more clearly illuminated the facts my life is neither particularly happy or our family balanced become.   Like 2/3rds of autism moms out there, I am single, unable to sustain a marriage or relationship while parenting a child with autism.  I thought I had found the most supportive type of partner possible- an autism sib.  He loved my kid, but more important, he understood my kid and didn't judge.  Too bad, he was unable to do either for me.  The chances of a divorced mom of 4 children with an autistic child finding love again are somewhat similar to the occurrence of flying pigs- it ain't gonna happen.

No, I haven't turned into "that mother" who puts her child on a different diet every week (although the diets seem to help *some* kids), has his body de-toxified or chelated, and gives him vitamins and supplements galore (although vitamins never hurt anyone).  I still have never played the "blame game" beyond moments of wondering what a 5 day Pitocin induction does to a baby's neurological system.  A vaccination, or 20, did not cause Andrew's autism.  What did?  Some funky mix of biology that may or may not been triggered by something in his environment is the best guess I can make.  I'm not trying to "cure" him, although I now admit if there was a proven and safe cure, I'd fight to be the first in line to procure it.

I think all autism moms are more energetic and involved with helping raise awareness when their kids are young.  I was a force to be reckoned with in the local Star Market when some grumpy old lady complained about Andrew's behavior when he was a preschooler, chastising her until she looked ashamed.  That scene repeated itself dozens of times over the years, people saying "why are you allowing your child to misbehave? He needs a good spanking" or staring.   I organized "Andrew's Team" for the Autism Speaks/NAAR Boston Walk for many years (the team raised over $35,000 in its incarnations thanks to our wonderful friends and family).

I did not want to hear the stories people with older autistic children, or acquaintances, told.  I listened to stories of an adult with autism who flicked the lights on and off repeatedly during dinner, who hid things, aggressed at his family, whose loving parents helped found an adult living community for those with autism.  I couldn't believe then that my adorable 6 year old little boy, who drew houses and towns an architect would approve of, and made the most amazing forecasts, all while having some savant-skills with calendars and math, would ever not be safe around me, or would hurt his siblings.

Then, my cute little boy grew into a strong, handsome young man.  He stopped making forts for his multitude of Build-A-Bears and sleeping on a bean bag in his Buzz Lightyear tent, using social stories with Boardmaker pictures to navigate his world and communicate his wants and needs.  He became a pre-adolescent whose sensory system (always in need of more input and welcoming of deep pressure and hugs and squooshes) went into overdrive, who screamed not because there was something pressing to communicate, but because he could not control himself.  He became a young man who lashed out at those who love him;  hitting, swearing, spitting, and even biting when he doesn't get what he wants, even when it is something I have no control over.  He complains about kids who scream at his school, yet can not make the connection that kids in our neighborhood and community look at him as the kid who screams.

Do not doubt this: I love my son and will advocate fiercely for him so long as I am taking breaths.  I will cherish the moments of connection, the snuggles he is sometimes still willing to give, and the calm that envelops him when he is engaged in preferred activities.  But, I will mourn the boy I was so convinced would "lose the diagnosis" solely with good teaching, lots of carry-over, and even more love and devotion.  Andrew is a young adult with autism spectrum disorder (PDD-NOS, Aspergers, call it whatever you want) who will need support and structure to learn, to work, and to live his entire life.  I better start channeling some of that energy from five years ago when I was raising money for autism research into creating living and vocational opportunities for kids just like Andrew.

I will have hope as Andrew starts school at Pathways Academy on Wednesday that this will be "the program" and methodology which will best meet Andrew where he is.  I'm not at peace, but I am willing to meet him halfway and try to show compassion and kindness when the neurons in his brain are not connecting and he can't do anything but scream and pace (in our house, it's called "doing laps").  It's not peace, but it is the best I can do.