On Saturday, I met an old friend for the first time.

Several months ago, I struck up a friendship online with a fellow blogger Spectrummy Mummy.  It happened very naturally.  Our writing styles are similar.  Two of our kids are the same age.  We write about the same things.

She quickly became a confidante.  Someone I could bounce ideas off of.  Someone that I could e-mail at 4am with a question or complaint, and I knew she’d answer it.  And “get it”.  But we had never actually spoken to one another.  Or connected in person.

So when I read that she was going to be moving to the other side of the world this summer, I knew we had to meet.  Somehow.

We chose the day before Mother’s Day to meet in Boston.  She would fly up, I would drive in.  It would be our day to just be…us.

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I had no idea what Spectrummy Mummy looked like or sounded like.  However I know her kids’ names, their diagnoses, and tiny details of her daily life.  The weird thing about blogging friendships is that you get to learn the most intimate of details about the other person, but nothing superficial.  It’s the opposite of creating friendships in real life.

I had it all planned out.  I was going to get to the airport early, complete with my homemade “Spectrummy Mummy” sign to find her at the airport, and then I’d whisk her into Boston on a grand sightseeing tour.  She’s British, so I planned to show her all the battlefields in the city where we beat her country.   I drove in to Boston, parked my car in a hotel garage, and headed for the bus to the airport.

And I missed it.  Only in Boston will a bus drive away as you’re coming down the stairs to get on it.

So instead of my grand “Welcome to Boston” plan at the airport, I had to send her a text that I was going to be late.  Of course.

**********

We hugged at the airport like old friends, and headed back into the city to Faneuil Hall.  The conversation flowed so easily.  The sun was shining, and we grabbed a lemonade and sat on a park bench.  And talked.  And talked.

It was like we’ve known each other for years.  We talked about our kids.  Our husbands.  Our families.  Our pre-kid lives.

No awkward pauses.  No kid interruptions.  No phone calls from school.  Nothing but just…us.

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Halfway through our lemonades, I looked across the plaza.  A group of well dressed people were gathering in front of the entrance to the marketplace.  I knew why there were there.  Our senior senator, Senator John Kerry, was having a town meeting inside.  It was open to the public.  All you had to do was sign in.

I had been told about this by some friends and it seemed like the perfect opportunity to do some autism awareness and advocacy.  After all, we were already there.  We were autism moms.  And as I told my friends, you can take the moms away from their children with autism, but you can’t take the autism out of their kids.  Or something like that.

The night before I had rehearsed my question for the Senator in my head.

Senator Kerry, can you state whether or not you’re committed to the reauthorization of the combating autism act?  Can we talk more about our military families and the high incidence of autism amongst military children?  Can you tell me why my friend’s husband has to leave her family again so soon after returning from a long tour?  How can we help my other friend, who is at home putting together her son’s IEP while her husband is in Afghanistan?  What supports can we give them so he’s not worried about his child at home while protecting his country?

I turned to Spectrummy Mummy.  “Do you want to go in?”

“It’s up to you.”

I stood for a minute and watched the people file in.

I couldn’t do it.

I was definitely intimidated, that is true.  But I was also tired of fighting.  This was my one day that was just me and my friend.  I couldn’t do it.

At that moment, I didn’t want to be an autism mom.   I just wanted to be…me.

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We ate at a restaurant where we didn’t care about the ingredients.  We watched a street performer demonstrate the changing of the guard (which was quite amusing to Spectrummy Mummy, her being British and all).  We debated the merits of spending $12 for a half dozen cookies.  We took a picture with a Storm Trooper outside of Newbury Comics.

me, Spectrummy Mummy, and a storm trooper

Spectrummy Mummy, Storm Trooper, Me. Need more proof that I'm not a "hugger"? Look at all that space between me and the Storm Trooper (photo credit: some random tourist)

When the skies opened up and the rain poured down, we ran back inside Quincy Market for cake and hot chocolate.  And sat on the floor.

No worries about kids running off.  No anxiety about the loud noises of the giant crowd taking refuge inside with us.  Just…us.

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My plan of taking Spectrummy Mummy on a tour of the city scrapped because of the rain, we headed over to the Seaport Hotel to meet up with Varda from The Squashed Bologna.  She was there for a blogging conference, and it’s where I had parked my car.  It seemed like the perfect last stop before taking my friend back to the airport.  We sat in the hotel bar with Varda, drank a bottle of wine, and talked some more.

me and Varda

Varda and me. She looks much more rested than I do. (photo credit: Spectrummy Mummy)

Our only time constraint was getting to the airport on time for Spectrummy Mummy’s flight.  We had nowhere else to be.  We talked about our writing.  Our plans for the future.  Plans for our kid’s future.  I debated spending $7 for chocolate covered pretzels.

And then, it was time to go.

A ten minute ride to the airport, three hugs goodbye, and my new/old friend was gone.  And I fought back tears the whole ride home.

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Online friendships can be tricky.  When you read someone’s work for so long, you picture what they could be like in person.  You’re so in awe of all that they do, and so inspired by what they write and say, you wonder if you could even be in the same room as them, let alone spend the day together. I have been lucky enough to meet some of my fellow autism blogging friends in recent months and now count them among my best friends.  These people I can count on to have my back in an instant.

I can now include Spectrummy Mummy in that group of my best friends.  The day we spent together was one of the best I had had in a long time.  It was the first day in almost a year that I had just been…me.

There’s a special connection that autism moms have.  An instant bond.  An total understanding.  And no matter our backgrounds or our beliefs or the specifics of our child’s diagnosis, we have a common ground.  We “get it”.  We’re here for each other.  Helping each other to bring out the “just me”.

From down the street or across the globe.

(to read Spectrummy Mummy’s account of our visit together, click here for part one and here for part two)

No one could ever know me
No one could ever see me
Seems you’re the only one who knows
What it’s like to be me
Someone to face the day with
Make it through all the rest with
Someone I’ll always laugh with
Even at my worst I’m best with you, yeah

It’s like you’re always stuck in second gear
When it hasn’t been your day, your week, your month,
or even your year…

I’ll be there for you
When the rain starts to pour
I’ll be there for you
Like I’ve been there before
I’ll be there for you
‘Cuz you’re there for me too…” – I’ll Be There For You by The Rembrandts

“Blood is blood”

This was my Grandpa Leo’s version of “Blood is thicker than water”.  He would say it every now and again, jokingly, when he would talk about his blended family.  Even though I was related to him by marriage (he was my mother’s step-father), he always treated us as if we were blood relatives”.

When Howie was diagnosed with PDD-NOS last year, I sent an e-mail to three of my cousins.  All three have children who are just a year younger than Howie, and we visit with them quite often.  I sent them this:

As you may know, last week we took Howie to a developmental/behavioral pediatrician for his evaluation, and today we had our follow up/diagnosis meeting.  Basically it’s what we’ve suspected all along – she diagnosed Howie with autism spectrum disorder calling it PDD/NOS.  Howie’s weaknesses show up in his social processing skills, mainly in terms of how he relates to others, his inability to read social cues, etc.  She said that with intense therapies and immediate intervention, we have a good chance of helping him incorporate coping strategies into his everyday life so they become part of his daily routine.
While hearing the diagnosis hasn’t been all that easy for Tim or me, it’s been validating for us in a way because we’ve always known there was something going on with Howie, and now we can get him (and us) the help we need.
I’m filling you all in on this for a number of reasons, obviously the primary one being that you’re his family and I know you love him and want to know how he’s doing.  I’m also letting you all know that because of all the hard work we have ahead of us, especially in the coming year, we’re going to have to restructure things at home to make life work better for Howie and us all.  Kids like Howie crave structure, routine, and predictability, and Tim and I have to respect that and help him learn to function appropriately in different social settings.  What it might mean is for at least the immediate future, changes to our daily routine will be difficult for us.  I’m not saying that we won’t be visiting people or wanting visitors to come here, but within the confines of those changes in routine we’ll need to factor in some familiar routines for Howie and stick with them.  I’m hoping that you’ll all understand and help work with us to make that successful.
So that’s it in a nutshell.  We know things could be worse, and we know that all of these things make Howie who he is, and we can’t and won’t expect him to be someone he isn’t.  While we aren’t looking forward to all the hard work we have to do, we are looking forward to seeing the positive changes in our family.  Thanks for helping us get there.

I sent them this e-mail to give them the “out” – to let them know that if they didn’t want to spend time with us or have their kids around Howie, I would understand.  It would make me sad, but I would understand.

To their credit, none of them stayed away.  At all.  And as I got brave enough to tell the rest of my extended family, their response for the most part has been the same.  They are still here.

I know I’m lucky.  And I know that this isn’t typical.

I know that for a lot of families struggling with special needs, their immediate and extended families aren’t the most understanding or supportive people out there.  And for them, they’ve had to create new families of friends and caregivers who can be there when needed.

Which leads me to this.  Two of my friends are about to go through some major changes in their lives.  One friend’s husband is being deployed in two weeks.  For a year.  Another friend is having major surgery and will be off her feet for quite some time.  Both friends have boys on the spectrum.

These are incredibly strong women who are about to change their whole parenting mindset.  One will become both father and mother, picking up the activities that used to fall to her husband.  The other will need to give up much of her motherly responsibilities in order to focus on her recovery and her health.

At our last support group meeting, we asked them how we could all help.   What can we do to make things easier?

These were questions that neither one could answer right now.  They didn’t know specifics about what they would need.  They both just wanted to know that we all would be there if and when they did need us.

And as new members of their families, we will.

Friends are there to plan playdates, organize carpools, and bring over wine and chocolate.  Family is there to do laundry, walk the dog, pick up prescriptions and be on call in the middle of the night for emergencies.  Friends are there if you ask them to be, family is here when you need them to be.

It may not be “blood is blood”, as my Grandpa said.  But sometimes, the family you create can be just as good or even better than the one created for you.

Grandpa Leo

My Grandpa Leo

Everyday(everday) should be(should be) a family reunion
We should speak
From the heart
And let love be the solution
Let us forgive (forgive)
Put the past out of the way(put the past out of the way)
No time to wait (no time to wait)
The time has come to give love everyday” – Everyday (Family Reunion) by Chaka Khan, Gerald Levert, Yolanda Adams and Carl Thomas

Imagine my surprise when I got the e-mail yesterday.

My blog has been nominated for an award – the 1st Annual SPD Blogger Awards.  From Hartley’s Life With 3 Boys.

It’s no joke to say it’s an honor just to be nominated.  It’s very true.  I started writing this blog because of Hartley and the other amazing writers in her SPD blogger network.  I found her site through a link on another online essay about sensory processing disorder.  At the time – a year ago – I didn’t know that anyone else had kids like mine.  I felt alone and overwhelmed.

There, on her site, was a long list of blogs.  Writing about the exact things we were going through as a family.  And suddenly, I wasn’t so alone.

I’m nominated along with some of the most honest, most heartwarming blogs I’ve ever read.  To whomever sent in my name, I thank you.

Please come vote for me (twice a day!) from now until midnight on January 22nd.  I’m in the inspirational category along with Brotherly Love, Comfort in the Midst of Chaos, and The Gift Blog.

SPB Blogger Award link

Vote For Me!

Once you vote, check out some of the other blogs listed.  They are my favorite writers and they are all awesome, inspirational, funny, resourceful and new.

Thank you for voting and for being such supportive and understanding friends.

Sincerely,

Alysia

I’m watching my son Gerry with one of his best friends.  They are sitting on the swings in the backyard, reading a Star Wars book together.  At their feet are the toy lightsabers that they have been playing with for over an hour.

We’ve been talking a lot about friends in our house.  Specifically, how do you make new friends?

Gerry and his friend have been best buddies since preschool.  They live around the corner from us and since the age of four they have been in the same class together, including this year.  They have similar personalities, interests and senses of humor.  They even look a little alike.  When his friend was interested in Transformers, Gerry got interested in Transformers.  When his friend started playing Lego Star Wars on the Wii, Gerry asked for it as a birthday present.  Everything that his friend liked, Gerry liked.

Until recently.  Their interests have started to diverge a bit.  Gerry’s friend is a huge fan of Harry Potter, wizard stories and magic.  Gerry, much like his father, isn’t really interested in those things.  His tastes run more in the science fiction/detective genre – movies like Star Wars and books like Encyclopedia Brown and Charlie and the Chocolate Factory.  Gerry’s friend met some new kids this year in third grade who liked wizardry as much as he did, and because Gerry didn’t role with the Harry Potter crowd, he was feeling a bit left out.

Of course, I didn’t know any of this until one day in the car he told me he wanted to make a movie called “Three”.  When I asked him what that meant, he said it’s because he feels like he’s three different people – one person with his friends who like imagination games, one person when he’s playing sports, and one person at home.

Pretty astute for a eight year old.

It got me thinking about friends in general, and at what point do we begin to compartmentalize our friends into different groups.

At Howie’s age in preschool, the teachers say that everyone is your “friend”.  The kids are taught to be respectful of one another and that everyone should play together and get along.  The concept of course is great – that no matter what we treat each other with kindness at the block table and during snack time.  For Howie in particular, this is important.  He’s lacking the ability to understand how to walk up to a group of kids and ask to play with them, and misses the social cues needed for appropriate game playing and sharing, so he uses social stories and scripts to help him join in.

But at some point, most kids start to realize that not everyone is your friend.  Maybe it starts along gender lines.  Maybe then common interests start to bond – whether it’s a love of baseball or Legos or Star Wars (if all three could be combined I think my house might explode).  And some kids, for better or worse, just aren’t that nice to everyone else.  Most kids start to realize that not everyone has to be your best buddy.

I say most kids here because this is a big fear of mine for Howie.  He’s getting conditioned to believe that all kids are your friends, when at some point, there will be kids who won’t treat him well because he’s different.  I don’t know if he’ll have the understanding to know when kids are treating him poorly, or telling him to do things that he shouldn’t do in the name of “friendship”.  At some point, the social script has to change.  I just don’t know when that happens.

I’ve been talking a lot about this with Gerry as he struggled with the fact that this best friend of his was going off with other kids.  I reminded him that even though his friend had made new friends, it didn’t mean that their friendship was over.  I told him it was a great opportunity for him to try to make new friends himself – to seek out others who loved Star Wars as much as he did.  We did a little role playing about how to talk to another boy in their class who he thought seemed nice, and I even bribed him a bit by offering to let him watch Star Wars: Episode One if he talked to this other boy at snack time.

The whole conversation had me thinking about my own friends and if I have my group of “three”.  I have friends who have kids the same age as mine so we talk about homework, and baseball practice and after school activities.  I have friends who have kids on the spectrum like Howie and we share stories, struggles and IEP meeting strategies.  And there’s the third group of friends – the people who have known me forever – the type of friend that you might not see for a year but the moment you’re together it’s like you just saw each other yesterday.  The type of friend that you can sit on a bench together in Rockefeller Center and just…be.   I rely on all of these friends to get me through the day, and without them, I’d be lost.

So I get where Gerry is coming from on this.  When one piece of that friend puzzle feels like it’s pulling away, it can make you feel a bit out of sorts.

It’s five o’clock and I have to tell the boys it’s time for their get together to end.  They both look at me with those annoyed faces that eight year olds make.  They’ve recently found their way back to each other – putting aside their diverging interests to get back to just playing.  I watch them get on their scooters as they head to the end of our street, where they will separate : Gerry back to our house, and his friend to his house around the corner.  About two strides in, they take off, racing each other and laughing so loudly I can hear them through the closed window.  They are two best buddies, having fun just…being.

Everyone deserves to have that one friend that you can always count on to be there for you no matter what.  Of all the things that I wish for my kids, the most important one for me is that they are a good friend.  If Howie can find just that one person that he clicks with – that understands him and likes him, quirks and all – I’ll be happy.  And as I watch Gerry and his friend wave goodbye to each other, I know that for him, that wish has already come true.

(This post is dedicated to a very special friend of mine – the one person who understands the depths of my love for food that turns your fingers orange and who has always let me be just me.  I am thinking of her tonight…)

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Why can’t we be friends
Why can’t we be friends
Why can’t we be friends
Why can’t we be friends” – Why Can’t We Be Friends by War

I am beyond honored to have my essay about my support group posted on today’s Thinking Person’s Guide to Autism site.  I have nothing but respect and admiration for the team that runs this site, and I have learned so much from them.  As a community we need to support each other – in person and online.  I hope that I’m helping to do my small part in that.

One note to my friends in my support group, I want you all to know how much this group has meant to me personally.  You have changed my life and my outlook for the future.  And for that, I thank you.

Here’s the post:

Lean On Me


I’ve been thinking a lot lately about the show “The Golden Girls”.

Stay with me for a moment…

I was recently reading one of my favorite blogs written by my new friend Partly Sunny. I call her my friend even though I’ve never met her and have only “conversed” with her through our blogs and by e-mail. She has a perspective on all things autism that is different from mine, and recently she asked me if she was upsetting me with some of her comments. My response was of course not, that I respected her opinions and point of view, and I found her comments to be refreshing and important to hear.

All this started me thinking about my new community of parents with kids on the spectrum and parents of kids with sensory processing disorder (and in so many cases, these parents are one and the same). We listen to each others’ stories, comment on them, and then tell our own and get our own comments. I’ve been lucky enough to meet an amazing group of parents out there in cyberspace and in person. I enjoy hearing their stories and others do me the favor of listening to mine.

And for some reason, all of my new friends reminded me of the show “The Golden Girls”.

Still with me?

“The Golden Girls” was a show back in the mid to late 1980’s about four older women living in Miami. Each woman had a distinct personality and role on the show. I’ll out myself as a faithful watcher those Saturday nights through high school (now you know how exciting my life was back then). There was Dorothy, played by Bea Arthur, the voice of reason in the group and clearly the one in charge. Her mother, Sophia, was played by Estelle Getty, and was the wise-cracking sarcastic one, yet lovable in her own way. There was Blanche, the sassy southern belle man-chaser with a heart of gold played by Rue McClanahan. And my favorite, played by Betty White, was Rose. She was naive and took everything literally. She was the sweetheart of the group and the one they protected the most from the outside world.

So on Saturday nights for seven years (and for decades in syndication), these women entertained America. On the surface, they had very little in common and disagreed on a lot. Yet they had a formed a bond stronger than those disagreements, and at the end of every episode there was some sort of group hug.

That’s what this amazing community feels like to me.

I read a lot of blogs and websites and have the good fortune to have people reading mine, and have made many friends along the way. We have our voices of reason like Dorothy who guide us in the right direction. There are the wise-crackers like Sophia who are always there with a joke or comment to make us laugh. There are the sassy Blanches with the heart of gold. And of course, our sweet Roses who will always say the nicest things to make us feel better, even when the situation is dire and sad. We disagree on a lot – the causes of autism, what treatment methods to use, and whether or not we should look for a cure. In many ways we have almost nothing in common. To extrapolate on a saying “if you’ve met one parent of an autistic child, you’ve met ONE parent of an autistic child”. Yet remarkably we have one strong bond: the desire to be there for each other in whatever way we can. Because we “get it”. Because we’ve been there. And because we need people to be there for us.

Just like the end of every “Golden Girls” episode, each night before I go to bed I feel like I’m getting a big group hug from everyone out there. Every comment that I read, either on my blog or on others, reminds me that people care. Every text or e-mail I get from my friends shows me that I’m not alone. Each day my faith in humanity is restored by the Dorothys, Sophias, Blanches and Roses out there in cyberspace and in my daily life.

Thank you all for being my friends.

Thank you for being a friend
Traveled down the road and back again
Your heart is true your a pal and a confidant.

And if you through a party
Invited everyone you ever knew
You would see the biggest gift would be from me
And the card attached would say thank you for being a friend.
” – Thank you for Being a Friend by Andrew Gold (Golden Girls Version)

When I became a parent for the first time, I sought out many different mothers who had been there before, learning all I could from them in an attempt to become a better mother myself.

When I became a parent of a special needs child, I only sought out one.

Let me tell you about this friend of mine.

And even though I have chosen to share our story publicly, she has not.  So for the purposes of this post, I will call her “Hope”.

I met Hope on the first day of preschool for my oldest son Gerry.  Having just moved to town a month before school started, we didn’t know anyone at all.  As we waited outside the school doors for the teacher to arrive,  Gerry hid behind my leg and I wrestled with Howie, who was then 6 months old.  Hope’s son came right up and introduced himself to us.  Hope, slightly embarrassed by her son’s forwardness, came up to first apologize and then say hello herself.  She was so kind and welcoming that day that I tried to seek her out each afternoon from then on.  We discovered that we had a lot in common and quickly became friends.  Gerry had his first solo playdate at her house that fall.

I can’t remember the exact moment when she confided in me that her older son was on the autism spectrum.  However, I clearly remember my response: “oh, really?”  That was all I said.  At the time I really had no idea what she was talking about.  Autism was a foreign word to me – conjuring up images of “Rain Man” and rumors of what I had heard about Albert Einstein.  It didn’t really compute with me.  I had seen her son when we were over for those playdates.  He could talk.  He could read and play and communicate.  There were times when she had pulled him aside for breaks, and had told me it was because he was  on a strict behavior plan.  I thought she was just describing her parenting style to me.

I didn’t really think of it much after that day.  We continued to get together for playdates, although they became harder to plan when the kids ended up in different kindergarten and first grade classes.  Hope and I would also try to get together without the kids so we could have some time to talk without interruption.

It’s around this time that I started to notice things going on with my own son Howie’s behavior.  First it was his food aversions – his reluctance to eat anything with any sort of texture or cold temperature.  I remember telling Hope about it, sharing my frustrations and confusion with her.  She sat, listened, gave me some suggestions and said “That sounds a lot like my son when he was Howie’s age”.

Then at age two it was Howie’s behavior.  His inability to process anything we told him.  His strange lack of fear of running into the street and the fact that he couldn’t get it when we told him how dangerous it was.  The way he just laughed when we’d discipline him.  We had this feeling of complete incompetence when it came to parenting, because nothing we did seem to work.  I shared this all with Hope over various phone calls and lunch dates.  Each time she’d sit, listen, offer suggestions and say “That sounds a lot like my son when he was Howie’s age”.

It was these last conversations that helped me see what I had been missing with Howie.  Clearly something was different about him in the same way that Hope’s son was different too.  When our school system evaluated Howie and deemed him ineligible for services, it was Hope that I turned to for advice.  She told me to trust my gut, seek out an outside opinion and get on every and any wait list to see a developmental pediatrician.    And she reminded me that it was nothing to be ashamed of, that whatever we learned could only help us and help Howie.

Hope was the first person I called when we finally got Howie’s PDD-NOS diagnosis.  I told her what the doctor had said, that she thought Howie was on the spectrum but on the “mild, high-functioning” end.  After several minutes of me relaying the laundry list of services and supports that the doctor suggested, I was finally quiet.  Hope’s only question to me was “So, how are you feeling?”

That’s the kind of person she is.  Hope wasn’t curious about the social speech classes, or the ABA services, or the one-on-one aide that the doctor recommended because she knew all about those things.  She was more concerned about how I was taking this all in, and how I felt about the diagnosis.

“Relief”, I told her.  “I’m really relieved.  Now we can move on and get the help we need.”

And really, that’s how I feel about Hope.  Relief.  Relief that I met her when I did so that we could become friends before I needed her guidance and support.  Relief that she was smart enough and caring enough to push me in the right direction to get the diagnosis we needed.  And relief that I had someone in my life who knew exactly what I was going through.

I know that I’m lucky to have had a friend like this.  Without her,  I’m sure I’d still be struggling with the challenges of figuring out what autism spectrum disorder means.  I know there are many mothers and fathers out there going it alone without anyone they can talk to.  Every parent deserves to have someone they can turn to who will sit, listen, offer suggestions and say “that sounds just like my son”.  Every parent deserves a “Hope”.

When you’re down and troubled and you need a helping hand
and nothing, whoa, nothing is going right.
Close your eyes and think of me and soon I will be there
to brighten up even your darkest nights…
you’ve got a friend.
” – You’ve Got A Friend by James Taylor