January 2012


(note: I was tagged and asked to contribute to an IEP meme on Solodialgue – a way of sharing our experiences and knowledge of the process.  She’s an amazing writer and our kids are a lot alike, so I couldn’t say no. Here’s my contribution.)

I was out for drinks the other night with some friends.  And as much as we tried to talk about ourselves, the conversation floated back around to our kids.

I had just had our annual IEP meeting for Howie.  We were also going through his 3 year evaluation as well.

I told my friends about the meeting and about how I thought it went really well.  The discussion around the table was about how to make things work for Howie in school in a truly individualized way.  The actual definition of an Individualized Education Plan.  I went through the ins and outs of our new plan, why we made the changes we did, and how I feel like we’re all in a good position now to help Howie move forward.

You made that happen.” my friend said.  I was a little startled, not quite knowing what she meant.

“It’s because you came to the table in a respectful and smart way.  You advocated for Howie and you knew what you were talking about.  They all understood that around the table.”

It was quite a compliment.  One that I will readily accept.

I need to be a major player on the IEP team to make sure my kid gets everything he needs to help him succeed in school.

**********

I could share the details of my son’s IEP here, but since every child is different and has different needs, I thought I’d go a different direction.

The IEP meeting itself can cause stress and anxiety for weeks leading up to the day, and the meeting itself can be quite daunting.  It’s usually the parent(s) and then any number of therapists, educators, and administrators sitting around a big table.  You’re discussing the most intimate and detailed issues about your child.  It can get emotional and painful quickly – on both sides.

I have worked hard to get to a place of mutual respect with all players on my son’s’ team.  So I thought I’d share how I’ve been able to make our IEP meetings successful so far.

I’m not talking bringing cookies and coffee to the meeting.

I’m talking work.  For me.

I have to do my homework: The IEP meeting can get overwhelming quickly as terms and jargon get thrown around the table.  Before our first meeting for my son three years ago, I asked a friend to send me a copy of her son’s IEP.  Not so I could copy it, but so I could learn the language used.  I understood that a flowchart would be used to determine my son’s eligibility for special education programs based on his autism diagnosis.  I became familiar with the different parts of the “grid” and delivery service methods.  I went to sites like Wrightslaw to understand the process.  And each IEP meeting, I make sure I know what each goal means and how he’s been progressing on them.  So that way, when our OT says “I’m going to move myself from the ‘C’ part of the grid to the ‘A’ part of the grid” I know that means that Howie no longer needs direct OT service work, but that she’s adding herself as a weekly consult to make sure his sensory needs are being met in the classroom every day.  Or when the BCBA says “We’re going to start taking more ABC data on Howie to better track his behavior issues” I know that means Antecedent/Behavior/Consequence data. That way, we’re not taking time to go over the details of the words in the meeting so we can have more time to have a philosophical discussion of what that means for my son. I also make sure I have read every report they have sent to us and have copies of the reports with me at the meeting.  I need to be as prepared as the other people at the table.

This also means filling out any and all paperwork that they send me.  For Howie’s evaluation, I had to complete a number of speech/language home assessments and a new sensory profile.  I did it the day I got them.  If I didn’t, I’m pretty sure I would have lost them in the sea of clutter in my house.  The therapists appreciated how quickly I got them back, because it makes their job easier too.  In our meeting, our special education director complimented me on returning the IEP meeting acceptance form and thanked me for answering the questions.  He said “Most parents just check off that they will be here.  They don’t take the time to answer the long term/short term goals questions, or write down what their child’s strengths and weaknesses are.  You help us by answering those questions.”  I can’t imagine NOT answering them.

I Know The Players: The names and titles of the people sitting around the table can be daunting : physical therapist, occupational therapist, school psychologist, special education director, etc.  But they are also regular people who play an important role in my son’s daily school life.  I need to know who they are and what they do before that meeting.  Howie’s OT has been working with him for three years now, and over those years I’ve gotten to know her well and she knows me.  So when she tells me in the above example that we’re dropping OT direct service, she looks right at me and says “We’ve been talking about this for a year.  He has met all his goals in amazing fashion” I know she’s telling me the truth and I trust her judgment.  Our speech/language pathologist is the same way.  She lives in my neighborhood and I wave when she goes by on her daily walks in the summer.  We stop and chat when we see each other.  Our special education director has a son who was in Howie’s preschool.  I send thank you emails. I drop in to school and say hello.  We have monthly meetings with his classroom teacher and BCBA to check in on how things are going.  I know them, and they know me.  They know my other two boys.  We aren’t strangers.  So when I walk in that room, there are no surprises and no unfamiliar faces.

Because we know each other, they know I will be as honest with them as they are with me.  I will give them the information they need to help my kids.  I made sure they had a copy of Howie’s recommendations letter from his developmental pediatrician before the meeting so they could read her suggestions and ideas.  I have been upfront about the fact that we have home behavior services now for Howie, and have even had his consulting therapist go into school to observe him there.  I’m not holding back, and I expect the same from them.

Because of this trust, they know I’m actually looking for information to help with Howie at home when I ask for weekly reports on his OT and social speech sessions and daily logs from his aides.  It’s not that I don’t trust that it’s happening, it’s that I want to be able to continue his work at home in a way that he understands.

I Know My Kid:  I am fully aware of my son’s strengths and challenges.  I’m not under any false impressions about his behavior, nor am I ignoring the progress that he has made.  So again, I know it’s okay to drop direct OT service from his IEP this year.  I know he has met his goals because I see him write, color, cut, fasten and zip every day.  I also know that his sensory challenges are not managed appropriately by him in school or home.  So I would never agree to dropping access to the OT room or a weekly consult to train staff to implement his sensory diet.  I’m also in full agreement that he needs weekly social skills session taught directly by the speech/language pathologist.  And I would never – at this point – agree to giving up his one-to-one aide, nor would I give up his extended year summer program.  And they know that.  It’s not about picking my battles here, it’s about knowing what my son needs.  So I’m not going to argue for services that aren’t appropriate.  But I will push for any and every service he needs for success at school.

I’ve learned to use direct and unemotional language in the meetings, but never letting them forget that we’re talking about an amazing 5 year old boy.  Our goals as a team are the same – to help my son succeed.  We’re all on the same page.

It’s still personal.  It’s still about my son.

My son’s team knows this and it leads us to creating a respectful discussion around the table.  We may disagree but we when we do it’s about the issues and not about personalities.

I have had to do a lot of prep work to get us to this place.  But it has yet to feel like they are out to “get us”.

**********

I’m not naive enough to think that this is some magic formula for the perfect IEP meeting.  I know that my experience, unfortunately, is not the norm.  I have friends who have done everything right and still end up fighting to get their kids even the most basic of services.  Money, personalities, and a million other factors can make IEP meetings miserable for all sides.

For me, the key has been realizing that I am equally as important as all the other people at that table – maybe even more so.  That is my child we are talking about.  His successes, his failures.  When he succeeds, we’ve done our job.  When he doesn’t, it’s not because of something he did.  It’s because of something we as a team didn’t do to help him.  I will make sure that his support team loves him and respects him as much as I do.

Our team is now heavily invested in helping my son reach his potential.  They want to see him smile every day.

That is our number one IEP goal.

Life is very short, and there’s no time
For fussing and fighting, my friend.
I have always thought that it’s a crime,
So I will ask you once again.

Try to see it my way,
Only time will tell if I am right or I am wrong.
While you see it your way
There’s a chance that we might fall apart before too long.

We can work it out,
We can work it out.” – We Can Work It Out by The Beatles

I can’t make resolutions because I always fall flat.  They are always bigger than me, bigger than what I can take on.  Eat better.  Join a gym.  Get more sleep.  All lofty and important goals.

All completely unattainable at this point in my life.  If these were my goals, I would fail.

Not quite the outcome I need.

So instead of making a CHANGE, I’m making some changes.

Little “c”.  And plural.

I’m over at The Oxygen Mask Project, talking about matching my socks and taking a shower every day.

Baby steps that make me feel like me.

But it’s also about realizing that I am as worthy as everyone else in my family.  If I match their socks and make sure they shower, don’t I deserve the same?

Come on over.

Click HERE for A Change (Will Do You Good)

If you know someone who needs a reminder to breathe, tell them about The Oxygen Mask Project.  It’s a site for ALL parents – moms and dads – and not just special needs parents.

Come join us.

a conversation.  from tonight.

Gerry came out of the shower and was scrounging around for his pajamas.

“Mom.  I have an idea for that book we were talking about.”

He was alluding to a discussion that he and I had had a few months ago.  We were talking about his relationship with Howie, and I said maybe we could write a book together about it.

“Shhhh.” I said. “Tell me quietly.  I don’t want your brother to hear.”

Gerry stopped what he was doing and looked right at me.

“When are you going to tell him he’s…different?”

I stood there.  Waiting for what was coming next.

“Don’t you think he should know about his autism?  So he understands?  I know most of his friends are from his school and are like him, so that’s really good.  But at some point, shouldn’t he know?  Because really?  Sometimes it’s very stressful for me that I know but he doesn’t.”  His eyes teared up a little.

I knew I had to choose my words very carefully here.  This…was important.

“Yes, of course he needs to know.  Dad and I just have to figure out the right time.  He’s only five.”

“Do you have friends who have kids with special needs?  Kids who are older?  Can’t you ask them when they told their kids?”

And then my kid wows me.  Again.

“You know, it’s not fair.  All his timeouts.  At first I thought they were good.  Teaching him.  But if he can’t help it, then the timeouts aren’t fair, are they? It’s like if you’re driving and your car’s wheels lock up.  And you hit something and cause a lot of damage.  It’s not your fault that the car didn’t work the way it should.  Right?”

I’m in awe of this kid.  Of how much he loves his brother.  Of how much he gets it.

“Mom.  Shouldn’t he know so he understands?”

“Yes.  He should.  I will ask my friends how and when they told their kids.  And what they said.  You’re a pretty smart cookie.  Now let’s talk about that book.”

So, I’m asking you.  My friends.  When did you tell your kids that they were…different?

I’m accustomed to a smooth ride
Or maybe I’m a dog who’s lost it’s bite
I don’t expect to be treated like a fool no more
I don’t expect to sleep through the night
Some people say a lie’s a lie’s a lie
But I say why
Why deny the obvious child?
Why deny the obvious child? ” – The Obvious Child by Paul Simon

(part three of the #yearoftheoxygenmask.  It’s a trilogy. I think.)

January 17th, 2012.  10pm

I’m sitting on my bed, waiting for the hair color to set it.

I’m two hours away from turning 40.

I send a message to some friends.  “Quick!  Best thing about being 40. Go.  Before I cry.”

And like the amazing friends that they are, they all jumped in with reasons why their forties have been the best.

And interestingly…their answers were all the same.

Forty was the year that they started really knowing who they were.  They looked in the mirror and saw their true self.  The pretenses were gone.  The need to please everyone was gone.

Forty was the year that they started really focusing on themselves.

One friend said: “You know who you are, what matters and who your friends are.”

And another friend put it, it was the beginning of “me”.

Not in a selfish way, but in a “I’m a person too” kind of way.

I wrote back: “Oh goodness…this is making me happy and teary at the same time. That’s good right? Could also be the hair dye fumes…”

**********

January 18, 2012 10:40am

My Facebook status: “To my incredible amazing friends who got me over the “I’m 40″ angst…I thank you. So grateful for all the birthday wishes today. Got my birthday hugs from the boys, and hot coffee and a great present from Tim. Forty is pretty good so far…

**********

January 18, 2012 11pm

I am saying good-bye to my very good friends as they walk out the door.  They are five of the people who know me the best, and they came by for a spur of the moment cheesecake, coffee and chocolate covered strawberry party.  They arrived at 8:30, and we sat at my kitchen table and just talked. And laughed.  A little about autism, a lot about ourselves and our lives.

As I closed the door behind them, I realized this was the first time I had friends over in the evening in almost ten years.  My kids had never slept alone long enough or slept soundly enough to ever have anyone here.

I told Tim a while back that my thirties were about the kids, and my forties were going to be about me.  And him.  Us.

He reminded me that my forties will still be about the kids, Howie in particular.  I know that.  And being their mom is the greatest thing that ever happened to me.

But it won’t be just about them.  It can’t be.

Forty.  I can do this.  This is me.

**********

This is why my friend and I were compelled to start The Oxygen Mask Project.

Once upon a time, a group of special needs moms started talking about their lives.

They talked about how devoted they are to their children and to making sure that their kids’ needs are met.

But somewhere along the way, they had forgotten to take care of themselves.

The Oxygen Mask Project has one mission: to give parents a place to feel supported when they take a moment to catch their breath.  Guilt free.

**********

January 19, 2012 11:30pm

I’m still awake.  The house is finally quiet.  This has been a tough day for Howie in a string of tough days.  He’s stopped eating, only drinking his yogurt smoothies.  His aggressions have increased.  His behavior is difficult.  I can tell he feels out of control of his body. I think he’s fighting off something.  Or maybe it’s the change in weather.  I don’t know what it is and he can’t tell me.

I want to help him but I am exhausted.

And then I remember the logo from The Oxygen Mask Project:

Tomorrow morning, I’m doing something I’ve never done before.  My friend is coming over with her son to watch Lewis.  I am going out.  Not for an IEP meeting, not for a doctor’s appointment.

For a hot stone massage.

A totally guilty 40th birthday pleasure.

The in-her-thirties Alysia would have never said yes to my friend’s offer to watch Lewis.  I would have been wracked with guilt about it.  My pride would have told me to say no.

Now that I’m forty?

I am taking care of myself so I can take care of my kids.  I need a hour just for me so I can give the other 23 hours of the day to my boys and to Tim.

My friend knows that I will pay it forward.

Because that’s how we take care of each other.

This is what we do.

**********

We hope you join us over at The Oxygen Mask Project if you haven’t already.  Visit our Facebook page and cheer on other moms and dads as they take a moment for themselves.  And check out our blog for all the great posts from parents sharing what they are doing to take a moment just for them.

Let’s take that first deep breath together.

Sleep delays my life (get up, get up)
Where does time go? (get up, get up, get up)
I don’t know
Sleep, sleep, sleepy head (get up, get up, get up)
Wake it up…up (get up, get up)
You’ve got all your life (way up ahead) (get up, get up, get up)” – Get Up by REM

(note:  It’s my day at Hopeful Parents, but I’m also publishing the post here too.  This was something I want to keep here with me for a long time, to refer back to when I need to. So you can read the post here or below.)

What if someone came to you and said the following things:

Why do we view “disability as a deficit model”?  Meaning, why do we look at what people with learning differences are lacking or without?  Why do we try to remediate those “deficits”?

Why are special education graduate programs geared towards teaching “behavior modification” in the classroom?   Why aren’t schools interested in understanding why kids think and behave the way they do but instead focused on fixing the “deficits” to fit in?

Why do we look at celebrities who have disabilities as achieving IN SPITE of their disability, rather than BECAUSE of it?

Why do some “first responders” like teachers and doctors view disorders like autism as the end of the world for our kids?

Why do we believe that people can not achieve because they have a label?

One twenty-eight minute video.  And all these questions were asked.

I watched Garret Westlake, CEO of Stem Force Technology, talk, and my heart grew.  I had hope for the future.  Not just for my kids on the spectrum, but for any kid who has been labeled with a “disorder” or “disability”.  In his talk “Disability as a Catalyst”, he lays out all these questions.

Garret flipped the world on its head for me.

We’re told as parents that our kids’ disabilities will hold them back.

But what if it’s the very thing that moves them forward?

What if colleges looked at a student’s individual strengths and what they could contribute to their campus community, rather than rejecting them based on a composite test score?  What if employers did the same?

What if  special education teachers were trained to understand the science behind our kids’ brains?  What if they knew how to find that spark that makes them special and bring it out?

What if our kids were made to feel proud of their learning differences?  What if someone told them that their Asperger’s was a strength, not a weakness?

What if the very thing that makes our kids “different” is what makes them more marketable?  More in demand? More incredible?

What if we as parents knew that from the start?

Watch the video.  As my friend Jess said over at a diary of a mom, people like Garret are “…creating a path to full participation, brazenly removing the barriers to success for people with autism – and doing it by standing the entire paradigm on its head.  This is how it begins.”

This is how it begins.  I am a hopeful parent again.

For these guys:

For more on what companies like Stem Force Technology are doing, click HERE. For information on their Asperger’s Leadership Conference, click HERE.

And watch the whole video here:

Do you know who I am
Do I know who you are
See we one another clearly
Do we know who we are

We are of the spirit
Truly of the spirit
Only can the spirit
Turn the world around” – Turn the World Around by Harry Belafonte

(part two in the Year of the Oxygen Mask series.  I think there may be more coming)

I was sitting in a small restaurant, having lunch with a friend, when everything changed.

It was a rare treat.  A kid free lunch.  My friend lives two hours away and we met in the middle.

She’s an autism mama.  Just like me.

So of course, we talked about our kids.  And how the autism diagnosis has changed our lives.

The things we do now that we never thought we’d do.  And the things we don’t do that we always thought we would.

The big pile of resentment that grows with each year, and the need to just let some things go.

My friend is a tireless advocate for families like mine, and she had recently run for elected office.  I watched her campaign from the sidelines and became emotionally invested in her run, even though I couldn’t actually vote for her.

“I think the reason many of us got so caught up in your campaign was because you were doing something bigger…something more than just about autism.”  The words sounded weird as they came out of my mouth.  Offensive, even.

I tried to clarify.  “I mean, you were talking about the economy, and schools, and taxes and…regular stuff like that.  It was like you had a life outside of all this.”

Those words sounded even harsher.

My friend, being the incredible person that she is, saw through my fumbling words and understood my intent.  She agreed that it was empowering to feel like there was more to her than being her son’s mom.

And then I said it.

“We spend so much time helping the world see past our kids ‘label’.  We want people to see them for who they are and not get stuck on the diagnosis. Right?”

Right.

“Why, then, are we so connected to the label of ‘autism mom’?  If we don’t want our kids to be defined by the label, then why are we so defined by it?”

Silence.  We both just sat there and let those words hang.  And simultaneously, we slumped back in our chairs.

“You’re right,” she said.  “The autism diagnosis has taken over my life completely.  There has to be more than that.”

Our kids need to see us as more than that.

**********

It’s a conversation that I’m still playing back in my head.  I’m a different person since my kids’ spectrum diagnoses.  I had to change.  I had to become a stronger person and better advocate for my kids to get the services they need.  I had to read things I never thought I’d read.  I had to know words that I never knew existed.

My kids needed the autism label to get them the help they needed in school and at home.  It helps describe why they behave the way that they do.  It helps others understand why my boys see the world differently and interact with others in a different way.

The “autism mama” label has introduced me to the most incredible people in the world – people I consider my best friends now.  We share a common bond and life experience.  They understand why I laugh and why I cry.  They are the people I want to be around because they get me.

But there is more to us all.

When Howie is older, I want him to be able to say “Yes, I have autism.  And I’m also a husband, father and I love to fix cars.”

My sons have autism.  It makes them who they are.   It explains them, but doesn’t have to define them.

I am an autism mama.  It explains me.

But it doesn’t have to define me.  I want to say “Yes, my kids have autism.  And I’m also…”

The next step in The Year of the Oxygen Mask is figuring out what that “also” is.

I’m not letting go of the autism mama piece. That’s the most important part of me right now, and probably forever.

But I feel like I’m missing some other parts of my full identity.

Scars are souvenirs you’ll never lose
The past is never far
Did you lose yourself somewhere out there?
Did you get to be a star?
Don’t it make you sad to know that life
Is more than who we are?” – Name by The Goo Goo Dolls

(this will be a post in two parts.  Probably.)

It was about this time last year.

I couldn’t breathe.

I would feel it wash over me, covering me, suffocating me.

I couldn’t move.  I couldn’t get dressed.  I went through the motions of feeding and clothing the kids. I lost all interest in everything.

I cried. A lot.  And was angry.

I didn’t know what it was.  All I knew was that this wasn’t me.

It would come.  And then it would go.

I would try to describe it to Tim but I couldn’t even find the words.  We agreed that I would talk with my doctor at my annual checkup.

**********

I sat on the table in the doctor’s office, trying to describe what was going on.

“My hair is falling out.  I’m not sleeping.  I’m just feeling…out of sorts.  Maybe it’s my thyroid?  Or hormones out of whack? My youngest is two, maybe my body never bounced back?”

I couldn’t say what I needed to.  I’m completely overwhelmed.  I can’t breathe.  I cry all. the. time.

“We can run all those tests,” she said. “We can rule out a thyroid or hormone level issue.”

Then she looked right at me.

“You’re a mom in your late thirties.  You have three young boys, two of them with extra needs.  You aren’t sleeping, you aren’t exercising.  I bet everyone else’s needs come first.”

I nodded and looked at my feet.

“I bet there are moments when it feels like a wave coming on.  You’re okay one moment, and not the next?”

Again, more nodding and feet looking.

“I can prescribe something for you to take when you start to feel like that.  But you need to start taking care of you.  Exercise.  Even if it’s just running up and down the stairs when the kids are in the shower.  You can’t do it all.  No one expects you to.”

I walked out of there promising to think about the meds.  I promised to start taking care of me.

That was a year ago.

**********

I’ve been able to manage the wave.  So far.

I can feel it coming.  My body tenses, my chest constricts.  I yell more.  I eat more.

Sometimes there are triggers.  A call from school.  A playdate that goes bad.  Or good.  A doctor’s appointment.  A developmental evaluation form.

I know now that it will be short-lived and it will pass.  So far.

**********

But I still haven’t been able to do the things for me.

I have three kids who are as different as day, night, and afternoon.  They all have needs.  They all have doctor’s appointments, therapy appointments.  All need 100% of my time all the time.

I give that to them and more.  And by the end of the day, there’s nothing left.

Tim described it like a raisin.  I start the day like a grape.  And slowly all the juice inside dries up, leaving me like a raisin by bedtime.

I have to get the juices back.

I’m not even talking spa vacation.

I’m talking eating lunch sitting down.  Remembering to shower.  Changing into pajamas before falling asleep.

Reading a book.  Watching a movie with my husband.

A friend of mine proclaimed this the “Year of the Oxygen Mask” for her, meaning that it was time to remember that we need to be able to breathe if we’re going to help our kids stay afloat.

It’s the “Year of the Oxygen Mask” for me too.

Step one: making another appointment with my doctor.

**********

If you are feeling overwhelmed, panicked, paralyzed…remember that you are not alone.  Read this brave post from my friend HERE.  Or this from another incredible friend HERE.  Or this raw, honest post from The Bloggess here.

It’s okay to talk about it.  In fact, it’s necessary.

Reach out. Get help.

Put your oxygen mask on now.

When I was younger, so much younger than today,
I never needed anybody’s help in anyway.
But now these days are gone, I’m not so self assured,
Now I find I’ve changed my mind, I’ve opened up the doors.

Help me if you can, I’m feeling down
And I do appreciate you being ’round.
Help me get my feet back on the ground,
Won’t you please, please help me?

And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like, I’ve never done before.” – Help by The Beatles

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