We’re Everywhere

I met two people today at a meeting.  The three of us have never met before.  It was by chance that we’d be sitting at a table together.  To break the ice the young gentleman on my left asked me about my daughter.  It was kind of stuffy in the conference room so I was glad he broke the ice.  I told him my daughter was three.  I had to leave her with a friend in the waiting room.  He said she was cute.  I thanked him.  We started to shuffle through some paperwork we were about to go over and I continued.  I said I was a teacher in my previous life but chose to stay at home now.  Next, it was his turn to tell me a little bit about himself.

I learned he had an 18-month old.  A son.  He babbles but without words.  But, he’s watching him and his development.  I don’t know why I thought his last response striking.  It made me think he knew a thing or two about autism.  I guess I assumed he was just a regular guy with a regular family with nothing like autism on the radar.  But, he did know something about autism.

I maintained the polite smile on my face, but my heart sank. I thought about his little boy and remembered when my son was 18-months old.  He was so happy, so vocal, so typical.  Now it’s quite the opposite.  Without sounding alarmed I said, “Oh, my son doesn’t speak now.  He used to but…” and I spilled as much information as I could in the next 3 minutes because our conversation was now holding up the meeting.  I told the young father that my son was vaccine injured, had autism, is in special ed with supports, and that I’m a writer contributing to a project called The Thinking Moms’ Revolution.  I said he should check out the blog and search the site for encouragement.  I told him we’re just a bunch of parents helping each other while learning how to help our kids.  We’re their voice because we have to be. Because some of our kids have no voice anymore and this is just what we have to do. Then I focused myself on the speaker who was waiting for me to stop talking.  She’d have to wait a little longer.

When I describe what happened to my child to people I’ve just met I usually get a “Huh?” sort of gaze.  This young man knew more than I gave him credit.  He quickly offered, “Yea, my sister’s kid is on the spectrum.”   She has a boy.  His nephew.  A five year old.  High functioning, but still with OCD issues.  The grandparents were the one to see the red flags.  They knew something didn’t seem right and encouraged this young man’s sister to seek someone out to help her boy.  She did.  With early diagnosing with early intervention, he’s doing much better.

Later, at a break in the meeting one of the administrative assistants who was keeping busy with her work during the meeting startled me.  Without looking up as she sorted our next packet of papers she asked, “Do you know anything about dual diagnoses for children in special education?”  It took me a second to register the question because I didn’t realize she was directing it toward me.  It was my turn to say, “Huh?” and gaze in disbelief.  I was stumped.  Without realizing it this woman had listened to everything the young father and I were sharing.  Her son has a genetic disorder that appears to be coupled with some autistic behaviors.  His IEP supports the disorder but it sounded like she wanted more support for her son.

My heart sank again.  Of course schools should and have to address and support all of the special needs issues.  But it sounded like her worry was that the school was going to dismiss the initial diagnosis if she asked for autism behavioral supports.  Since she’d heard me say that I was a former teacher and familiar with special ed issues because of my son’s background she was hoping I’d have an answer for her.

Her question was not a simple IEP question.  It sounded like a cry for help.  It was clear she’d already been ‘round the table looking for more services trying to understand her rights and how to help her child get what he deserved. I’ve been where she is asking other parents education questions because I didn’t know how to ask for the support my child needed.  I’ve gone back and forth to IEP law books and sites, to school admin and to other parents.  Getting every and any bit of helpful information for an IEP meeting is like gathering rounds of ammunition.  You don’t want to be locked and loaded, but sometimes it’s the only way to talk to the schools.

I told her I wish I knew more about special education because what I’ve had to learn on my own has been difficult.  I left the teaching field right before the explosion of the autism epidemic.  When I had my own son’s school woes it took tons of reading and knowing how to ask questions so that they will be answered with useful responses.  I also learned that going to other parents for support was part of the process.  Getting their advice, input and ideas was key.

I gave her a quick response on how to find some answers.  Then I said she should look up some autism information to know how to ask the school for behavioral supports.  If she can learn what to say and how to ask for specific services then maybe she’d feel more empowered.  Then, she had to get something from another room and left the meeting.  I wish I could have shared more with this parent who might have no one else to ask.  I was a stranger to her only 10 minutes earlier.  In that short amount of time I learned she’s part of my crowd – A Thinking Mom.  As grateful as I was to offer a fraction of what I’ve experienced I wanted to cry.

A short while later the meeting ended.  The administrative assistant returned to collect some items.  We had to sign one of the documents and I jokingly said, “You might want to hold onto that piece of paper.  That signature is going to be worth some money when my friends and I write our book.”  The young father chuckled.  On my way out the young father and I exchanged pleasantries.   He wished me luck with the book and with my son.  I told him to keep an eye on his boy and that I was really impressed with what he knew as far as the warning signs for autism.  I wished him well and said he’s a great Dad for knowing so much already.  I also said his son is a lucky kid.

The admin assistant said thank you to both of us.  I said a formal goodbye to her even though I wanted to reach out and hug her.  I was this young woman eight years ago.  I wanted to tell her to stay strong, learn as much as you can and then please, please share it with the next parent.

It was bittersweet for me today to meet these two people.  Our worlds came together at a moment that we could not have predicted.  Me, the “veteran” Mom with tons of information.  He, the young father stepping into parenthood already with the knowledge of red flags.  She, the curious administrative assistant quietly listening, gathering information, ready to jump in and go to bat for her own child.  The longer I stay and work to help my son the more I realize that parents like me are everywhere.

We are everywhere.

We are Moms and Dads.

We are parents of sick children.

We are asking questions no one wants to answer.

We are eagerly looking for advice from other parents.

We are bravely standing up to larger groups who should help but sometimes don’t.

We are looking for each other without realizing it.

We are walking this path not only for our own child but for each other’s children.

We are The Thinking Moms’ Revolution.

We are here.  We are here.

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4 Responses to We’re Everywhere

  1. We agree with you that “we’re everywhere.” But sometimes we feel alone in the fight against autism. Other than each other, we have not met any moms (locally) who think the way we do, believe that recovery is possible, or who have the same “fight and determination” within them. We feel like we live in a community of moms who are brainwashed by our local medical establishment. They are too afraid to try anything that differs from their mainstream doctor’s opinion. We know we are the parents of sick children, but people in our local autism community do not even believe their children are physically sick… they think, “that’s just autism… there’s nothing you can do.” It is so refreshing to hear from other moms (and dad) who think the way we do and are willing to fight against those groups that squash people’s hopes and say that autism recovery is impossible! Autism recovery (even after the age of 5) is possible; we are living it! -Leah & Molly

  2. Pingback: March 1, 2012: We’re Everywhere | The Thinking Moms' Revolution Starts Here

  3. Amy in Idaho says:

    I’m a trainer by trade and I’m lucky because I still get to do that every once in a while. I’m always excited to meet new people, put on my professional uniform and have that feeling of accomplishment at the end of the day. Last month I trained a large utility company’s customer service department – 7 sessions total. EVERY SINGLE SESSION had someone affected by autism and/or multiple chronic illness. I touch on my own personal story briefly in my training and once I do that, people start disclosing like crazy. I hate it that there are so many of us. I hate it that I can’t go anywhere without seeing affected children and families. I hate it.

  4. Alison MacNeil says:

    Every one who doesn’t have an autistic child always says to me, “it must be so isolating?” My response to that now days is “not really, we are everywhere.” The next thing I usually say is “and the parents are amazing.” I don’t know if it’s just that every autism family heads to Target on Saturday morning but it seems to me, I can’t get out of there without counting at least 3 kids on the spectrum every time I go. Beautifully put Mamacita.

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