Dear Mom,

I was trying to think of something special to do or say  for your birthday today.

Sometimes – ok a lot of times – spoken words just escape me.

I know our phone conversations are short.

Sometimes it’s because of the kids – too much fighting/wrestling/smashing and crashing – and my attention goes to them and not you.

But most of the time it’s me.

I have words, just on the surface, but I won’t let them come out.

Too much emotion I guess.

Too many things unspoken after all these years.

Too much going on in my head about my life, the boys, everything.

I’m afraid that once I start, the flood gates will open and I won’t be able to stop.

But if there’s anything I’ve realized, though, after all we’ve been through…

If you don’t say it now, you may never get a chance to say it at all.

So I’m doing it in the way I know best.  In a letter here to you:

Thank You.

Thank You for being the glue that held our family together.  Even before Dad was sick.

Thank You for everything you gave up those 13 months.

Thank You for being the strong one.  When the rest of us were falling apart, you were there for us.

Thank You for speaking up at the Town Democratic Caucus during the conversation about who would step into Dad’s seat at the State House.  You spoke for me when I couldn’t speak for myself.

Thank You for standing by my every decision I made those two years following when I was at the State House.  You never once told me what to do. But always stood by what I chose.  Even when I knew it was time to leave.

Thank You for standing by every decision I’ve made period.

Thank You for hosting our wedding at your house. I knew it then but even more now how hard it was – emotionally, physically and financially.  You never said no.  You made our day magical and special.  Rainbows and all.

Thank You for being at our house when Gerry was born.  And for sitting with me in the hospital when Tim needed a break.

Thank You for being here with Gerry when Howie was born.  Knowing you were with him made those difficult days a little easier.

Thank You for staying at our house longer than planned after Howie was born.  And for convincing me through my tears that I could parent two kids.

Thank You for your immediate and complete understanding and acceptance of the boys and their diagnoses and special needs.

Thank You for the trips to Story Land, the Aquarium, and everywhere else.

Thank You for the hours on the floor playing with Hot Wheels and Little People and Legos.

Thank You for getting Gerry out of here for ice cream when he couldn’t be in the house one more second.

Thank You for showing me that hope and love springs eternal, and that new chapters can be written with new loves.

Thank You for understanding these days when I can’t talk.

Thank You for always having room for us.

Happy Birthday Mom.

Thank You for being my mother.

I love you.

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Well, I know it’s kinda late.
I hope I didn’t wake you.
But what I gotta say can’t wait,
I know you’d understand.

Every time I tried to tell you,
The words just came out wrong,
So I’ll have to say I love you in a song.” – I’ll Have To Say I Love You In A Song by Jim Croce

 

 

 

Happy Mother’s Day!

I’m at the SPD Blogger Network this morning for Mother’s Day. With words I hope to hear some day…

SPD Blogger Network Post

My Mother's Eyes

Click HERE for My Mother’s Eyes

Pictures, like songs, have the ability to bring out memories that are buried down deep.

I’ve been thinking a lot about that lately – those memories hidden away – after reading MOM-NOS’ great post about ASD (autism spectrum disorder) and PTSD (post-traumatic stress disorder).  If you haven’t read it yet, you should.  It’s here.  And here.  And probably about 800 other places at this point.  It’s that good.

While thinking about that post, I wondered about my own moment of trauma.  The one I live over and over again, but have never shared.

This isn’t a B Side post, because while it’s a memory, it’s not a good one.  It’s not entirely an autism post either.  I guess it’s more of a “me” post.  And since I use my blog as free therapy for me, I suppose I’m entitled to a “me” post every once in a while.

note:  I know members of my family read this blog.  I’m giving you warning now that you might not want to read this, and if you do, I won’t want to talk about it later.  Because I’m writing about it here instead.

Last week of August, 1997: I’m with my family at the annual summer fair in Vermont.  Going to the fair together has been a tradition since I was little, and we always had our family “portrait” taken there.  This year, I resisted going.  It wasn’t because I was ashamed to be seen with my family – I was 25 years old and past all that.  But I was busy. I was working in college admissions and we were getting ready for the new school year to start.  I had things to do. But my parents were insisting that I go.  Begging, really.  So here we are at Scotty’s photo booth.  And we take our picture:

It’s our last one.

This will be one of the last times I go to the fair.  I’ve been a handful of times since this day, and never since I’ve had kids.

August 31, 1997: It’s one o’clock in the morning and I’m sitting in my apartment in my bed watching the news.  They are reporting that Princess Diana has died in a car crash.  The phone rings and it’s one of my best friends from college.  She’s calling to talk about the breaking news of the day and share the conspiracy theories already swirling all over the world.

I share with her my breaking news.  That afternoon, my parents sat me down to tell me that my father had cancer.  Pancreatic cancer.  I was awake watching the news because I was afraid to go to sleep.  My friend, in her first year of medical school, fell silent on the other end of the phone.  She knew what that meant.  A five percent survival rate.  Months of chemotherapy and other experimental drugs on the horizon.  A life changing moment.  We hung up and I stayed awake for hours.

I still cannot watch footage of Princess Diana’s car crash without thinking of that night.  For months after, I would leave SportsCenter on while I fell asleep so I wouldn’t have to be alone with my thoughts.

November 12, 1998: I’m sitting in my parents’ bedroom with my father.  We know he doesn’t have much time left.  We’ve given up on hospital stays and he’s come home to be surrounded by family.  The spreadsheet that I created to track his medications has long been pushed aside since we’re only focused on pain management now.  A week prior, he had won re-election to his third time in the Vermont Legislature.  I wrote all his campaign material and answered all the candidate surveys.  My whole family is at the house.  My brother had come home from graduate school to celebrate an early Chanukah, since none of us knew if my dad would be around in December.  He had started the journey back to school on this day, but turned around when my sister’s guinea pig “Ham” died in the afternoon.  He came back to help bury it in the pet burial ground we had on our property.  And now, my brother sat downstairs with my mother and sister having dinner, while I stayed upstairs with my dad.

I am eating Macaroni and Cheese.  We’re watching “Must See TV”.  “Friends” is on.  My dad is sitting across the room from me in his green recliner.  It’s where he chose to be during the times when he could no longer stand being in bed.

“I’m sorry (your sister’s) guinea pig died.”

The voice came from the chair.  Strong and clear.  The first coherent sentence I had heard from him in a long time.

“I know, Dad.  I’ll tell her.”

Then, a few moments later, the seizures start.

I yell “Dad!  DAD!”, and then “MOM!!  MOM!!”.  I didn’t need to call her name.  The baby monitor that my mom had on was already sharing what was happening.

I yell to her to call my uncle who lives next door.  I dial 911.

I forget in this moment that 911 had not come to our rural part of the state yet.   The time it takes for the operator to connect me to our local dispatch seems like hours.

I don’t need to give them our address.  Just our name.  My father had been on our town’s rescue squad for many years.  They knew where we were.

My mom and uncle usher me out of the room.  The ambulance arrives, knocking down the baby gate at the bottom of the stairs that was there to keep the dogs from getting up to my dad.  They take him away.  My mom, brother and uncle follow.  I stay home with my sister.

The call came from the hospital a couple of hours later.  My dad was gone.  “ER” was still on the TV upstairs.

It’s a year before I can watch “Friends” or “ER” again.

The green recliner is now at my house, and is my middle son’s special chair.  When the demons of his autism rise up, this is where he retreats.  He rocks there.  He curls up in the seat of the chair and feels safe.  It is his “green chair”.

I go over those last moments over and over again for the next 12 years.  Was there something I could have done differently?  Why I was the one in the room with him at that moment?  What else could have have said to him before I lost the chance to say anything more?

February 17, 2011: A giant package arrives in the mail addressed to me.  I open it and find about 50 pictures inside, sent to me by my cousin.  She was helping my 89-year-old Grandma move into a smaller place and thought I’d be a good “manager” of these photos.  I’m waiting for the kids to get home from school, so I have a moment to look through the pictures.  The first one I pull out is this one:

And all the memories come rushing back.

This day would have been my father’s 64th birthday.

February 27, 2011: I start this blog post and the healing process.  For the first time, I can write about these memories, although I’m not sure I’m ready to talk about them yet.  When I look at that photo I see uncertainty in some faces and blissful ignorance in others.  My parents know life is about to change.  I do not.

That picture made me think about the family I have now and the life-changing event of my son’s autism diagnosis.  I wondered if there was a photo of us before our world changed forever.  I searched and searched and found this:

family photo 2009

It was our holiday card for 2009.  This was taken three months before our son’s diagnosis.  As parents, we knew something was going on.  Our kids had no clue.

Two life altering events for me.  And the photos that trigger the memories.

———————————————————————————————————————

I chose the Harry Chapin song “I Wonder What Would Happen To This World” for a reason.  Harry Chapin was one of my father’s favorite singer/songwriters.  In July 1981 we were overseas on vacation when he read the news of Harry Chapin’s death.  I was young, so the memory is fuzzy, but I remember thinking this was one of the first times I had seen my father sad.  The lyrics below from this song are on Harry Chapin’s headstone.  I often think how different life would be for me now had the two events above not happened – if my father was still alive and if my son did not have autism.  While writing this post, I have realized that it’s useless to think that way.  What’s most important is how we take what is given to us and use it to change our corner of the world.  To let go of the past trauma and stay in the present.  And with that, I hope I can finally move on.

Now if a man tried
To take his time on Earth
And prove before he died
What one man’s life could be worth
Well I wonder what would happen to this world” – I Wonder What Would Happen To This World by Harry Chapin

“I’ve finally come to terms with the fact that I’m not the mother I thought I’d be.”

I spent 45 minutes on the phone this morning with a good friend of mine.  Like me, she’s a stay-at-home mom with three kids, each with varying degrees of special needs.  The conversation started with a discussion about kindergarten next year, and whether or not she was going to have her child in a full day program or a half day program.

“I’m leaning towards full day,” she said, “because I just don’t think I can be home with them anymore.  I’m just not cut out to be the mother I thought I wanted to be.”

I thought this was an incredibly brave thing to say.  And it sounded very familiar.

I’m definitely not the mother I thought I’d be, either.

When Gerry was born, I had every intention of going back to work.  But my job had long, unpredictable hours and the more we researched daycare, the more we realized that my entire salary would be going to pay for his childcare.  And when his food intolerance issues cropped up, I knew it was going to be too stressful for me to leave him with anyone else.   I had to make sure he was drinking the right formula and eating the right foods, and we were in the doctor’s office for constant weight checks.  Financially and logistically, it made sense for me to stay home with him.

(now, I will interject right here that I know how lucky I am that I was able to make that choice to stay home.  I know many parents don’t have that luxury, and would rather be home with their children than be at work, but they can’t.  I get that and I am grateful to be in the position to make that choice.  And my friend feels the same way.)

I told my friend that when I think back on that moment when I decided to stay home, I remember feeling excited and joyful and looked forward to all those milestones we’d reach together.  But Gerry was a clingy baby who would only nap on or next to me.  I couldn’t do anything for myself during the day.  Not even shower.  We were together 24 hours a day (he was also sleeping in our bed at night).  So, at 15 months old, I put him in daycare two mornings a week.

(I know this was a huge luxury.   But I was quickly going crazy, and with no local support system it was the only viable option at the time).

When Howie came along, things got more difficult more quickly.  And again, when Howie was two (and I was pregnant with Lewis), I put him in daycare two mornings a week.  I told myself that it was necessary with the new baby coming and he needed good peer modeling.  Truth is, I needed some quiet alone time.

I told my friend this morning that if Lewis wasn’t the king of naps, there’s a pretty good chance I’d be looking for a daycare arrangement for him now too.

All this goes against everything I thought I’d be as a mother.  Of course my kids and  I were going to spend every moment together – playgroups, playgrounds, museums and travel adventures.  The days would be filled with giggles and delight as we learned about the world together. The TV would never be on.  I’d be incredibly patient and never yell.  Each one of my kids would have my undivided attention and I could help them with any problem they had.  We’d sit and read books and do projects and fall into a big tired heap at the end of the day.

In our own beds.

I didn’t expect to be the mother I am now.  The mother who yells and shies away from playgrounds and museums because of the sensory overload.  The mother who turns on “Curious George” so I can get some laundry folded and a little bit of quiet time.  The mother who has seen machines and wires attached to her kids and spent hours with specialists.  The mother who knows the Early Intervention number by heart.  The mother writing this blog post in her pajamas at 2pm.  The mother who sends her 8 year old to his room to do his homework so he’s not bothered by his siblings.  The mother who worries constantly about her kids’ futures, not just 10 years from now, but 10 days from now.

As my friend and I talked, we realized that we’ve changed from the mothers we thought we’d be to the mothers that we have to be.

And for the first time in eight years, I decided I was okay with that.

I know there are mothers and fathers out there who are exactly the type of parents they thought they’d be, and I will admit that I’m slightly envious of that.  But my vision of motherhood would not have worked with my family.  I can’t be the perfect mom who can spend every moment with my kids.

So who can I be?

I can be the mother who is the first name called out in the middle of the night for comfort.   The mother that cheers on one son at the baseball field while chasing the other two off the field.  The mother that desperately tries to understand how to play Lego Star Wars on the Wii.  The mother that would do anything for my boys. The mother, who every once in a while, needs to be by herself.

By being who I have to be, I’m the mother that my kids need and want me to be.

I wouldn’t want to be anything else but that.

Well, who are you? (Who are you? Who, who, who, who?)
I really wanna know (Who are you? Who, who, who, who?)
Tell me, who are you? (Who are you? Who, who, who, who?)
‘Cause I really wanna know“- Who Are You by The Who

“What is your escape?  What is the one thing that you do that makes you feel like you?”

The question loomed over me all month long.  It was the discussion topic for our support group meeting.  In order to learn a little bit more about each other as people (and not just mothers of kids with special needs) we decided we’d share our “escapes”.  The hope was that it would get us all talking about the positives in our lives, and maybe discover that we had some escapes in common.

So all month I thought about it.  What was my escape?

(side note: I got permission from the women who were there to share this.  That support group is my safe haven to share things, and we expect that whatever we talk about there, stays in the room.  It’s our Vegas, baby.  And I’ll protect that confidentiality to the end.)

As we went around the room, the clear winner in the escape category was working, followed by exercising.

Then it was my turn.  What was my escape?

I had none.

“You blog?”, my friend suggested.

Frankly, this was going to be my original response.  It is what I do when I have time to myself and I love writing. It is something that is all mine.  But as I listened to the other women there, I realized it wasn’t really an escape.  It doesn’t take me away from everything else going on here, in fact in many ways it amplifies it.  I’m not “just me” when I’m writing.  I’m still my kids’ mom.

Blogging is sometimes more like free therapy for me.  So all the words and feelings don’t explode out of my head and land on the kids or my husband.

For my friends, work and exercising made them feel like they were accomplishing something.  Setting goals and achieving them.  An expert in something, the “go-to” person when things went wrong.  A time when their brains were switched from “mom” mode.  I remember that.  I used to run an office, manage payroll, plan the schedules for over 20 teachers and still teach at night myself.  Now I’m the mom who drops her kids off at school in her pajamas and forgets to pack lunches and snacks.

I left that night on a search for my escape.

I tried to think what it could be.  Maybe it was running?  This summer I ran in preparation for my first 5K race.  It did get me out of the house alone – just me and my iPod.  But it still didn’t feel like an escape to me. In order for me to actually get out to run, many planets had to align.  My husband had to be home to be with the kids.  I needed to have had a decent night sleep.  I couldn’t go when meltdowns were happening around me.  My running time depended on someone else’s schedule.

In my head, an escape had to be something that happened on MY time.  Not when I felt like everyone else’s needs were taken care of.

I went through it all in my head.  I don’t like to cook.  I’m not crafty.  I can’t sew.  Watching Martha Stewart for more than 5 minutes makes me itchy.

I have tossed around the idea of doing some part time work from home, but the last two times I had that thought I ended up pregnant again.  So you can imagine I’m a bit gun shy at the idea.

Before kids, we did all sorts of things to escape.  Tim and I would spend the weekend camping at the marina and go out on the boat all day.  We’d sit at Barnes & Noble and have coffee and read the Sunday paper.  We’d sit on the couch and do crossword puzzles together.

Even after Gerry was born I still found some time to escape.  He was in daycare three mornings a week, and I would go to Jazzercise or take a walk with the dog, or even grocery shop alone.  Howie went to daycare two mornings a week the summer before Lewis was born, and I used that time to get ready for the new baby.  It was my quiet time to plan as I pleased.

I need my escape to be when everyone else is engaged in their own thing as well.

With that, I realized that my escape time will be coming.  Next September, Lewis will be in preschool two mornings a week, and the other boys will be in school full time.  I’ll have five hours each week that will be mine again.

So I have 10 months to find my escape.  Maybe it will be something I’ve done in the past.  Maybe it will be something new.  I’m open to suggestions.  It’s ok that right now I don’t have that escape.  I know it will come.  I’m looking forward to discovering what that one thing will be for me, something that helps me flip the switch to “Alysia” mode.

In the meantime, I know that in my own house I am the expert.  I am that “go-to” person when things go wrong.  I’m the one setting the goals and it’s my job to help my family reach them.  And it’s ok if, for now, I leave the switch in “mom” mode.

Especially since I can do that in my pajamas.

“I said, ‘I never knew’…
That you liked Pina Coladas, and getting caught in the rain.
And the feel of the ocean, and the taste of champagne.
If you like making love at midnight, in the dunes of the cape.
You’re the love that I’ve looked for, come with me, and escape.” – Escape (The Pina Colada Song) by Rupert Holmes

I’ve been finding that lately I’ve been in a bit of a funk.

I seemed to be mired in all things autism lately.  So much of what I read and write is about my son and his issues caused by his autism, and how it affects him and our family.  There are some days that it feels like it’s all I talk about or read.  Many of blogs I read are autism-related, and 90% of the people I follow on Twitter are involved in some aspect of autism education or awareness (the other 10% are the cast members of Glee).  It’s not surprising that this is my focus, considering this is my life 24 hours a day, and I learn a tremendous amount from all the information I read.

Sometimes, though, I need a break.  And I’m guessing that people reading this might need one too.  Sometimes I just need to pull myself out of that world and into another one, even if for a moment.

So I decided that I would start a series of posts here called “The B Sides”.  I may be dating myself here, but “B Sides” were the flip side of record singles when they were released on 45s.  They were usually the songs that the artists were attached to, but the record companies didn’t think were as radio friendly as the A side.  Famous B sides include “Ruby Tuesday” by The Rolling Stones and “Rock Around the Clock” by Bill Haley and His Comets.

My B Sides are going to be stories about my favorite memories, ones that have had a lasting impact on my life.  I’m going to try to write a “B Side” at least once a month.  It may be more if I need it.

So for my first B Side: Squirrels In My Pants.

It’s 1994 and my family is at the Grand Canyon.  My sister, brother and I had never been there before, so while on a family vacation to Las Vegas, we decided to take a side trip to this amazing place.  It had been quite a journey to get there, complete with my father sitting in the front of the tiny 8 passenger plane to balance out the weight and my sister vomiting into a sock halfway through the flight.

I remember standing near the rail of the canyon with my family along side several other tourists who had been smart enough to take a bus there.  There were a few other families walking around, snapping pictures of each other with this unbelievable wonder of the world behind them.  And because we were outside there was plenty of wildlife around.  In particular, squirrels.

As we were all admiring the view from the rim of the canyon, a family near us caught my mother’s eye.  She was watching them intently with this worried look on her face.  The kids were crouched down on the ground with little bits of food in their hands trying to feed the squirrels.  Their parents were watching, laughing and encouraging them.

My mom was standing there saying under her breath: “Don’t do that.  Squirrels Bite”.

She was dying to go over there and say something to the parents.  The words would have been nicer (because she’s a nice person) but she wanted to tell them something like “How could you let your kids do that?  Are you crazy?”

We stopped her.

We all convinced her that it wasn’t her place to say anything.  The squirrels weren’t really going over to the kids, and it just wasn’t her business to butt in. And of course, we laughed, because while it was just like my mom to want to go over and protect those kids, the only words she could get out were:

“But squirrels bite!”

“Squirrels bite” became a catch phrase for our family from that point on, and still is.  We use it as a reminder whenever one of us wants to butt in to someone else’s business.  And after almost 15 years as a member of our family, my husband says it now too.  It’s just part of our language now.  It’s also a reminder of one of our last family vacations together, before we became adults and before my dad passed away.

Last week, I had a conversation with two friends that reminded me of this memory.  Both of these two friends have older kids on the spectrum.  We were talking about Howie and one of them asked me when I started to really notice that things were different with him.  I went back and forth a bit and I said that even though I knew early on that his sensory stuff was out of whack, I didn’t start to see other things until he was about two.  These friends have known Howie since he was little, and they said they saw it, maybe even before I really knew.  I asked them why neither of them said anything to me about. They said they didn’t think it was their place to come out and say it.  They didn’t know how I would react, and they both saw that I was already doing the things necessary to figure it all out.  Independently, they decided that the best thing for them to do was to help guide me and answer my questions, but never come out and say “hey – I think your kid is autistic.”

And they are right.  I’m not sure how I would have reacted at that time to hearing that, even though I probably knew in the back of my head that it was true.  It was something that we had to find out for ourselves.

Classic “squirrels bite”.  They were both dying to say something, wanting to comfort me and let me know I wasn’t alone.  But it wasn’t their place to say it.  Just like those kids at the Grand Canyon, I had to put the food in my hands and get bit.

I find myself in that same situation every now and again.  I see a child at the playground or the baseball field and I recognize the behaviors and mannerisms.  I see the dark circles under eyes of his parents.  But I don’t say anything.  It’s not my place.

But you might see me on the bench at the playground whispering “squirrels bite”.  Because they do, you know.  Just ask my mom.

(and I know I said I was getting away from all things autism here on The B Sides, but it still seeped in, just like in my real life.  I’ll try harder next month.)

—————————————————————————————

There are squirrels in my pants!
Tell me what’s makin’ you jump like that!
S-I-M-P, Squirrels in my pants!
Ain’t got no chickens,
Ain’t got no rats…
S-I-M-P,
Squirrels in my pants!” – Squirrels In My Pants by Phineas and Ferb

“I think I like being at school better than being at home.”

Those were the words out of my 8 year old Gerry’s mouth the other night.  I was wrestling with his younger brothers, getting them ready for the shower, when he tossed that bomb out at me.

It wouldn’t have been such a big deal, except for the fact that he is usually complaining about how much he hates school and wishes he could just stay home.  So this…this was a total twist.

But not a surprise.

I’ve waited a while to write about it, suffering some from writer’s block because the emotions and tears get in the way.  However, this week I’ve been reading A Diary Of A Mom’s spotlight on siblings and her amazing stories of her two daughters have reminded me that I need to put my spotlight back on Gerry.  The good, the bad and the ugly.

But I couldn’t get past the empty page – I couldn’t figure out how to put the right words down.

So I got some advice from an amazing new friend : “Start in the middle.  Don’t look for a beginning.  Don’t worry about structure.  Start with what hurts.  Then write.”

What I said back was this: “You’re right, of course. Except when it comes to watching my oldest struggle, it all hurts. It’s weird, I can write fairly easily about Howie. Watching him struggle with what he does is painful, but for some reason it doesn’t hit my core of motherhood like it does when I write about what a hard time my 8 yr old is having lately. Maybe because I have come to expect things to be hard for my 4 yr old. I just don’t know how to reach Gerry at all.”

I guess I’ll start with that.

In the past month or so, we’ve seen quite a change in Gerry’s behavior at home.  I hate to even write that.   First, he’s a good kid.  An AMAZING kid.  I’ve written so much about him before – he’s the kind of kid that parents want their kids to be friends with.  I can trust him to know right from wrong.  He’s an excellent student and continues to amaze his teachers with his ability to soak up information and his desire to learn more.  He is wise beyond his years and can carry on conversations with his dad that I long to understand.  He is an incredible big brother, tolerant and understanding and patient.

Usually.  Lately, however, not so much.

He is becoming increasingly less tolerant of Howie and his behaviors.  In the past, he’s been able to somewhat ignore the vocal stimming, the loud outbursts, the constant need for attention.  Gerry could play his Lego Star Wars game on the Wii and tune out the noise and chaos around him.  He can’t anymore.  Everything Howie does annoys him.  We’ve been eating in shifts for dinner because Gerry says the noise from Howie chewing with him mouth open is “so annoying I can’t hear myself think!!”

(The sensory avoider does not fall far from the sensory avoiding tree…)

We’ve done our best to control and help the situation.  We’ve told Howie that his babbling and outbursts can happen in our toy room area, but not near the TV or at the dinner table.  We’ve tried all sorts of bribes to get Howie to chew more quietly (I must say my husband’s recent “Jedi kids have to eat quietly in order to sneak up on the stormtroopers” worked well last night).  But we’ve also tried to explain to Gerry that we have to understand that there are things that Howie can’t control, and while we’re working helping him, we all have to be patient and understanding about it.

In addition, he’s worrying about Howie constantly.  He’s asked me many times about what kindergarten will look like for Howie – will he have an aide?  Will he take the bus or the van?  Who will help him?  The statement behind the question here is, of course, will it have to be him helping his brother?  Again, we’ve tried to explain to Gerry that it’s not his job to worry – that his dad and I will work it out with the school to make sure Howie is fine in kindergarten.

His response?  “I am the school.  This affects me.”

Of course, because he’s so wise beyond his years, we talk to him like he should understand.  Like he’s an adult.  But he’s not.  He’s still eight years old.

As his coping mechanism, Gerry spends a lot of time alone.  He does his homework alone up at Tim’s desk in our room.  He rides his bike outside alone.  He retreats to his safe spot – his room – to play with his Legos.  He reads alone, showers alone, watches TV alone.

It breaks my heart.  But it’s why his “I like school better than home” comment makes sense.  Can you blame him?

I’ve spent countless hours these past weeks trying to figure out why things are so different recently.  Was it the new school year?  Third grade and a new teacher and new friends have brought new stresses and pressure for Gerry.  And for the first time, he’s in a class with a few special needs students and their aides.  Is it the fact that he uses up all his strength, tolerance and understanding in the classroom and has none left for his brother?  Or is this just a “normal” sibling thing?  Has he just reached his breaking point, like we all do? All of the above?  None of the above?

Go ahead.  I know what you’re thinking.  Why didn’t I just ask him?

It’s because he and I never get any time just us.

We used to have it.  Before his brother was born, we had almost 4 years when it was just us everyday.  And even after Howie was born, we’d manage to have some time together – trips to the supermarket, time outside alone, reading books to each other.  We even went to New York City for my cousin’s wedding before Lewis was born.  We went to the top of the Empire State Building and watched it snow, wandered through FAO Schwartz in amazement, and saw the Statute of Liberty.

Where did that special time go? Hiding somewhere behind the chaos of our everyday lives. Pushed out by the meltdowns, the tantrums, the need to get dinner on the table before the house falls apart.

Gerry and I need to get that time back.

Starting this weekend.

Last night, after I got Howie to sleep, I climbed into bed with Gerry and told him my new plan.  Breakfasts with Mom.  Just he and I.  At the local diner – one weekend morning a week.  I told him we could talk, or not talk.  Eat blueberry muffins and drink hot chocolate and figure out if the table jukebox works.

Spotlight back on Gerry.

That light needs to be on ALL my kids, so no one is left alone in the shadows of this family.

Sometimes I feel like a motherless child
Sometimes I feel like a mother, a motherless child
Sometimes I feel like a motherless child
A long, long way from my home” – Motherless Child (spiritual)

So first of all, a big thank you.

I wrote one line last week about my youngest having his second early intervention appointment.  One line. And I got the most amazing, most overwhelming support from my friends – both in person and in cyberspace.

I got the phone calls I expected that day, the ones from my mom and from my husband.  But what I didn’t expect were the e-mails and comments and tweets (yes, I said tweets…sigh) from my friends here in town and across the globe.  I can’t express how much that meant to me.  It was so different from when I went through it with Howie and I knew only one person who would understand.  To have so many others check in with me…I’m speechless.  Thank you.

So, speaking of speechless…

It’s taken me a week to really be able to process our visit with the speech therapist last week.  It was the same woman who evaluated Lewis in May, so she was very familiar with our situation.  We were able to skip over most of the Michigan Early Intervention Developmental Profile and go right to the speech/language portion.  She went through the test, trying to get him to use his words to ask for the puzzle pieces, the blocks, the animals…and got nothing.  She tried to get him to repeat her words so he’d start talking.  She tested him a bit, forcing him to ask for something before giving it to him.  Nothing.

So since he wouldn’t talk, the therapist and I did instead.  She asked me how many words I thought he had (about 20).  She asked me how many of those words someone else could understand (about 10).  And she asked me how many of those words that someone else could understand were also spontaneous.

Spontaneous?

Meaning how many did he say on his own without prompting, without repeating.

About five.  Sigh.

The therapist wrote down a bunch of notes and asked Lewis questions.  He could follow two or three step directions but wouldn’t say anything to her.  I figured I needed to chime in here.  He has words, I told her.  I said I felt like I was walking a fine line telling her things, but I wanted to be honest.  I want him to get help if he needs it, but I was afraid that by telling her the things he could do, it might change his score, leaving him ineligible for services.  But I needed to give her the whole picture.  It wasn’t fair to Lewis, to the therapist, or to the system if I didn’t.

So I told her everything.  I told her he could count to 12, but wasn’t sure if anyone else could understand him.  She asked to hear that, and as she listened, she shook her head.  “I probably would have known he was saying ‘two’, but only because I knew the context”.  I told her he knew all the letters of the alphabet, and tried to sing along with songs but no words came out.  I told her that even though I knew he could say “Mama”, he never actually called me that.  I told her that I know he understands everything, but he’s starting to get frustrated because he can’t get us to figure out what he wants.

The therapist told me she appreciated my honesty and understood exactly what I was saying.  The counting and the letters, while great, isn’t really “speech” in her opinion.  It’s just rote sounds back.  She’s looking for labels of nouns, verbs to get his wants and needs across, and expressive language.  She sat there and scored the speech portion of the Michigan while Lewis had a snack.  Then she scored it again.  And again.

She looked up at me and her face said it all.  Yes, his speech was delayed.  But not delayed enough for services.

Same old story for us.  Just like our evaluation in May, and just like almost all of Howie’s evaluations, we’re smack dab in the middle of the “gray area”.

I could tell the therapist felt terrible.  She told me that she knows he needs help and would really benefit from services.  She’s worried about the gap between his expressive and receptive language, and is concerned that he’ll start to get frustrated and we’ll see behavioral problems creep out.  She could pick him up under “clinical judgment” for six months, but just like she told me last time, she’s worried that we’d lose time when he really needed it – the 2 1/2 yrs old to 3 years old time frame, where the speech demands are so much higher.  She recommended waiting again until January, doing another eval, and then she could pick him up from February to August, right before he starts preschool.

In addition, she gave me some new tips for getting Lewis to start talking.  She told me to “sabotage” his day a bit when it was just the two of us home, keeping things from him until he attempts the word.  I should concentrate on getting Lewis to say the last sound of the word, because he would use the same “b” sound for “bus” and “ball”.  She recommended that I focus on just saying one word, not a two word combination.  At that point, I had been trying to get him to say “more juice”, but in her opinion getting him to say just “juice” was the most important part.

(on a side soapbox note, the therapist also told me that if we had qualified, the fees would have been significantly higher than we had paid in the past.  Because of budget cuts, the department of public health was forced to either raise fees or increase eligibility requirements even more – by a 50% delay.  That meant that two year old would have to be speaking at a one year old level in order to qualify for help, thereby missing a whole group of kiddos who need help.  Of course, we all know that it means that when those kids get to school, their delays would have been SO significant that the department of education would have been footing the bill…same pot of money, just different department.  Just dumb.  ok, off the soapbox)

So, long story even longer…

This past week we’ve been trying really hard to implement her suggestions.  I wouldn’t let him down from his high chair until he said “done” instead of “da”.  If he wanted a banana, he had to say it and not “na na”.  And if he wanted out of his crib, he had to tell me “hi, Mama”.

It’s working.  He says “done” – the whole word – when he’s finished eating.  He’s saying “ba nana” (with the space).  And while he’s still not calling for me with “mama”, he will repeat “hi mama” perfectly when I say it first.

Great, right?  So why do I feel so guilty?

In one week of intensive work on my part, we’re getting somewhere.  It’s not like he caught up in a week, or will even catch up in a month, but we made progress.  Because I was giving him my attention.  You know, what a mother should do.  A mother who is able to focus on her kid.  A mother who isn’t completely exhausted with…everything else.  I know it’s pointless to play the “what if” game, but in this case I can’t help it.

Now it’s time for us both to play catch up.

“I may know the word
But not say it
I may love the fruit
But not taste it
I may know the way
To comfort & to soothe
A worried face
But fold my hands
Indifferent”
– I May Know The Word by Natalie Merchant

On my soapbox for one moment.

I read a lot of blogs. I mean A LOT. Probably too many (I think my husband would say scratch the “probably”). But I do it for a reason. In my constant struggle to become a better parent – maybe a more understanding parent – I search out others who are experiencing what I am and try to learn from their successes and lessons learned.

I read all these blogs because the mainstream parenting magazines just don’t fit my family anymore. I can’t tell you how many times I’ve picked one of them up with the teaser “Tips to help your picky eater!” and just put it down laughing. I need the “tips for helping your kid who will only eat crunchy orange food off of a green plate and has to drink his smoothie through a green straw!” Not surprisingly, that’s not the headline in next month’s Parents magazine.

However, it is the headline in many of the blogs I read. In addition to the amazing live and in person support group I have, these writers have become my guide through my everyday struggles. These mothers and fathers live what I live, and through our blogs and comments we share advice, ideas, and encourage each other to press on another day. Because it’s about our kids. We know that we aren’t medical experts, but we have been through enough to help others try not to reinvent the wheel.

But I’ve noticed lately a weird trend in some of the blog comments I’ve been reading. Things are starting to get nasty. Personal. People attacking the character and background of other bloggers. I’m not going to link to any of the personal attacks here because I don’t want to give them any more attention than they’ve already received. But it’s mean and unnecessary, and in many times there just to incite the other readers. Is that really what we’re all about?

Now I haven’t been writing for very long, so maybe this has been happening for a while and I’m just naive. I know that the autism community is divided on many issues – from causes to treatments to policy issues – and has been for a very long time. There’s nothing wrong with that. But to call someone a bad person or a bad parent because of what he or she believes or does for their child? Seems out of character for a community that wants their kids to be treated with respect and dignity in the outside world.

My father was the ultimate politician and I learned a lot from watching him. He would sit down with someone who was completely opposed to his position on a particular issue, listen to them carefully and thoughtfully, and then quietly explain his perspective and point of view. It was never about him or about pushing his agenda. He made it about the issue (usually about kids) and helped turn the discussion into a civil exchange of ideas. He would change the debate. More often than not, the person walked away with a new way of looking at the problem. And every time they walked away with a favorable impression of my dad.

Maybe it’s time to reshape our debate …again.

I’m joining with the amazing editors at the Autism Blogs Directory and am taking the next step to help create a new community. They challenged their readers to pick a blog they have never seen, read it, and leave a respectful and thoughtful comment. There are so many wonderful writers out there sharing their stories daily and I know I have a lot to learn from everyone.

So here’s my pick. It’s Laura from “Life in the House that Asperger Built“. I picked it because she’s a mom like me with children on the spectrum. But she’s also on the spectrum herself, as is her husband. I’m getting a unique perspective from her that I haven’t read anywhere yet, and I’m so grateful for that. I look forward to learning so much from her.

I’m hoping that others take up the same challenge. On the right side of my home page I have a long list of my favorite special needs blogs – choose any of them and you’ll find a fantastic writer behind that link. Have a child with sensory processing disorder? Click on ANY of my friends who are part of the SPD blogger network. A child on the spectrum? Click on ANY of my friends under “Websites I Like”.

I know that there are people who read this who don’t have kids with special needs (thank you friends and family who are here because I guilted you into signing up!) I hope you take me up on this challenge too. Are you a runner? Check out my friend Charlotte‘s blog. Interested in parenting and social justice issues? Read my friend Gaetane‘s blog. Or go to Google and type in your favorite hobby, click on blogs, and choose the first one that comes up.

Take a moment to read their latest post and leave a comment if you can. It’s the best way to rebuild our communities and support each other. It’s the best way we can tell each other we’re not alone. It’s the best way to start again.

I’m getting off my soapbox to look Spectrummy Mummy’s latest post. Her youngest was just evaluated by early intervention and I want to know how it went. I want to tell her that I’m there for her no matter what, because on Friday I’ll be in the same boat again. And I need her there with me then.

I think you’ve made your point now.
You’ve even gone a bit too far to get the message home.
Before it gets too frightening,
We ought to call a vote,
So could we start again please?
” – Could We Start Again, Please from Jesus Christ Superstar

I am not a “hugger”.

I’ve never been one, either. I’m not sure why. I’m just not a fan. When someone comes up to give me a hug, I can feel my body stiffen. It doesn’t matter if it’s a close relative or an acquaintance, it’s just not something I’m comfortable with. I have learned to cope with it but it’s not my favorite way to greet someone.

I’ve understand now that I’m what is called a “sensory avoider”. I don’t like being touched or standing in a crowded room. Places like Costco and Wal-Mart make me want to run for the hills.  I may end up paying more for diapers, but it’s better than having a panic attack next to the giant packages of paper towels.

My son Howie, on the other hand, is a hugger. A huge hugger. I haven’t officially kept track, but there are days when it feels like he has asked for about a thousand hugs. And all from me.

See the tabloid headline now: “Sensory avoider gives birth to sensory seeking kid!”. I don’t remember learning about this possibility when studying genetics in high school. Considering my husband is also a sensory avoider, we must both be carriers of the sensory-seeking gene.

Howie’s been a sensory seeker since I can remember. It started mostly with sleep issues, with a constant need to be next to someone (me) while sleeping. He created a technique he called “tunneling” – meaning he would stick his hands into the side of my neck and ask me to press my head down into his hand. This is how he would fall asleep for about two years until we discovered that weighted blankets, body pillows and 2mg of melatonin did the trick, although I still have to lay next to him at night with my arms wrapped around him in a giant hug as he falls asleep. Sometimes when he has a hard time falling asleep or is uneasy in a situation, he still asks if he can “tunnel”. With me. And only me.

The hugs can interfere with our daily routine. I’m trying to change a diaper, and he needs a hug. I’m trying to make or eat breakfast/lunch/dinner and he needs a hug. There are days when he asks me for hugs for hours straight. I know others see it and think it’s cute. When we had the Children’s Hospital researchers here a few weeks ago, Howie was clearly uneasy about them being in our house. He asked me over and over again “Can I have a hug?”. He would say this as he was digging his legs into my lap and his hands into my neck. The researchers smiled and said “aw, that is adorable!”. It was all I could do not to scream.

How awful is that? My own kid’s hugs can make me want to scream.

But it’s because they are more than just hugs, as I tried to explain to the research team. It’s his cry for help.

I’ve learned to differentiate between different hug requests – ones for when he’s happy and proud, ones for when he’s bored, ones for when his body doesn’t feel right after something he ate, ones for when he’s tired, and ones for when he’s completely out of sorts. Those last ones are the most difficult, because they hurt the most physically and emotionally. When he’s unable to regulate his body, he squeezes me so hard that he actually chokes me. But I know he needs them to make himself feel better, and it takes every inch of my being sometimes to give him the hug back.

But I do. Because I’m his mom. And I know it could be so much worse.

Until he learns how to regulate himself, those hugs are all he has to make him feel right. We’ve tried to teach him ways to help himself – squishing under pillows, sitting in the bean bag chair, climbing in the body sock – and we’re working on giving him better words to use when he’s out of sorts so others can help him. We’re always showing him more appropriate ways to get the sensory input he so desperately craves. My husband will pick him up and squeeze him like an accordion (because if he calls it a hug Howie runs screaming away from him), and Gerry will have a gentle pillow fight with him. My hope is that someday “Can I have a hug?” won’t mean “I need help”.  Someday it will just mean “can I have a hug?.”

I can’t wait to write that headline.

U can’t touch this
Look in my eyes,man
U can’t touch this
Yo, let me bust the funky lyrics
U can’t touch this
” – You Can’t Touch This by MC Hammer