This is one of those times when I’m going to make reference to my Facebook friends and risk annoying people, but they know me well enough to know that I am passionate and they love me anyway.

I posted this on my wall recently, with 2 words: SHARE THIS.  2 people did, out of over 500 (between 2 accounts).  Slightly disappointing, to say the least.

This is an excellent PSA, but you and I both know it won’t be shown during the Super Bowl (next year), the Grammys, Oscars, or during The Wizard of Oz.  It probably won’t get any airtime outside of 3am-6am on cable, in fact.  I haven’t seen it yet – have you?  Other than on YouTube, where you have to search for it if you know it’s there because somebody put it on their Facebook wall.

I want people to be as angry over this as I am.  Hollywood movies are getting away with using the R-word, so I guess that makes it ok?  You hear it dropped all the time in public, by people of all ages and socio-economic levels, and nobody even blinks.  I bet many of you cringed when you heard the opening lines of this PSA – those words have become painful to hear, offensive even in this context.  But not “retard.”

It seems we are early in the evolution of this word as an insult akin to the others.  From a sociological point of view, it’s interesting.  If you look up the history of the word, it’s derived from a Latin word used to describe someone who meets the clinical criteria for mental retardation, and was actually a later word (earliest usage is found in the late 1800′s) after its predecessors like idiot, moron and imbecile became derogatory.  It has only been considered deragatory since the 1960′s; seem recent, but that’s an entire generation that has continued to accept the word as a term used for anything that is unintelligent, less than worthy, inadequate – to say it nicely.  An entire generation, and it’s still going strong.

It parallels our society’s still-evolving acceptance of people with diverse intellectual abilities, in my opinion.  Although I dare say, when it comes to acceptance, we’re not quite evolving – we’re in the stone age.  We’re still trying to move people out of institutions and give them dignity of life.  The recognition that people with disabilities have the same rights to education as anyone else is a concept legalized only in the 1970′s.  The founders of HMEA were pioneers in fighting for the rights of people who were tossed away and left to lead subhuman lives in state homes for ‘imbeciles’ and ‘morons’ – just 50 years ago!  The people they helped are still alive!

I was talking to a fellow parent last summer and she described something someone said as being ‘retarded.’  I told her that’s not a word that should be used to describe anything, any more than I would point out a person and refer to them as “that nigger or that fag over there.”  Her mouth dropped open and she gasped.  ”It’s really as bad as THAT?!”  Yes, my friend, it is.  And we all have a responsibility to let others know that it’s in the same class as the other words we would never use.  I actually had someone un-friend me on Facebook and say that I’m over-dramatic and he doesn’t want to deal with me because I’m joining the effort to end the R-word.  Two examples of how much more work needs to be done.

I’m angry, yes, but I’m keeping the faith that with baby steps like this PSA and the Campaign to End the R-Word.  I’m inspired by people like this Dad who shared the lines below with Children’s Hospital of Boston.  I guess the only thing I can do is continue to reject the word and ask others to do the same.  Please share this with someone today, and be a part of something really, really big!
Being Retarded – by a father at the Down Syndrome Program at Children’s Hospital of Boston.

All around me, people use the word retarded without a second thought. Sometimes, I’ll say “Um, dude, really?” and they’ll say “Oops, my bad! But really! I was being so retarded!”

Sometimes, I let it slide. I realize that it’s a word that’s ingrained in our society’s vocabulary and people use it without a second thought to its meaning.

But what does it mean to be retarded? Well, I know what it doesn’t mean.

It doesn’t mean not being able to choose something for lunch despite 100 choices in front of you.

It doesn’t mean not being able to find your car keys.

It doesn’t mean saying the wrong thing to a person.

It doesn’t mean forgetting your best friend’s birthday.

It’s not something to describe yourself as when you’ve spilled your coffee, or tripped on a crack in the sidewalk.

It’s not something to describe your computer, car or phone.

According to Merriam-Webster Dictionary the word “retarded” means -

: slow or limited in intellectual or emotional development or academic progress

For me, it’s not just any old word – it’s my daughter. My beautiful, bright, happy, loving, amazing daughter who is slow or limited in intellectual development and academic progress.

In our household, being retarded means something different.

It means not being able to fully care for yourself.

It means not understanding what the doctor is going to do to you.

It means not being able to explain what hurts when something hurts.

It means not being able to ride a two wheeler. Or read. Or ever be able to live on your own.

But ever the optimist, I also know that retarded means…

…never realizing the negativity behind the word retarded.

…never knowing the insensitivity surrounded the word’s usage.

…never realizing the ignorance of people.

…never knowing how other people view you.

Being retarded also means…

…loving unconditionally.

…finding joy in the smallest of things.

…being self-confident.

…not realizing that there are limitations.

…innocence.

This was my Facebook status this morning:

On Martin Luther King Day, I’d like to applaud and reiterate my pride and awe for my parents. In the early 1970′s, my Mom and Dad (who only had me at the time, I was 5) adopted a child of mixed race, African American and caucasian. They went on to have 2 more children soon after the adoption of my sister. My parents were pioneers in mixed race adoptions, and I can assure you – they did not have it easy. They held their heads up high as they were the targets of bigotry, hatred, scorn, from every direction. So was I, and my sisters. They loved each of us equally, and still do. When you live with or in a situation, it becomes normal – it becomes a part of you. Myself and my family are both more tolerant and more aware of racial discrimination, and I also thank my parents for that. I went on to marry a man also of a different race, and we have 2 children of mixed race. And so now, while my family could make our own Benetton commercial, we prefer to simply call ourselves a FAMILY.

Even as we speak, lots of responses and “likes” are coming in under that post, and I’m appreciative that it is catching the attention of my friends.  As I think about my childhood and these experiences, I have to admit that the post had dredged up some dark and painful memories – mixed in with a renewed sense of pride and gratitude for the experiences and how they have shaped me.  And now, as an adult, I realize that those experiences also prepared me for my own journey as the parent of a child with autism.  My son will be 20 this year, so he was of that very early wave (although many came long before me) of the autism epidemic.  I guess that makes me a pioneer in some respects, of the generation who has kept their children home and not hidden from society (again, with a nod to those before me who did the same).  I have very distinct memories of the early 90′s when I was yelled at, asked to leave, reprimanded for poor parenting; when my son was kicked out of daycare, stared at by horrified bystanders – and while this goes on today still, the difference is, most people had never heard of autism, so explaining was futile.

My disabled peers were down in the basement at my school in the 70′s and 80′s.   But we were the first to share our classrooms with children of all races from the first day of Kindergarten without having lived through desegregation.   Children now have their disabled peers sitting next to them in the classroom and have no understanding of the concept of them not being allowed in their classroom at all.  They will not care that their next door neighbor has Asperger’s syndrome or Down Syndrome, or that there is a group home nearby.    The founders of HMEA were people who, like my parents, were also pioneers.   50 years ago they decided to begin the battle for dignity and an end to the cruelty of people in institutions.  My generation is taking that to the next level and carrying on the fight for educational and community equality and acceptance.  These are examples of what I’m talking about in my Facebook post – when you live in a situation, it becomes normal, and becomes a part of you.  I think that ‘you’ can be applied to the collective ‘us.’

As I read through this blog post I have come to yet another realization – that every generation has something to pioneer, a different societal wrong to fight against , to change our collective minds and make things better for others.  I wouldn’t change my life experiences because they have given me lessons, strength, faith and hope.  Wow, what an amazing time to be alive!

Perusing my friends’ posts on Facebook and Twitter, I’m struck by the wide variety of emotions evoked by being done with the holidays.  They range from “the kids are back to school!  Hooray!” to “not motivated to take down the decorations, because it means the return of routine.”  Some even go so far as “I didn’t think I’d make it through, I need to sleep for a few days.”  Even though this sounds comical, when it comes from a parent or caregiver of a child with special needs like autism or a mental health disorder, they are probably not joking.

My own son with autism is now 19, and is residentially placed year-round at a school that can handle his behavioral and intellectual challenges.  He comes home for weekends and the holidays.  It’s been a few years now, but the memories of school vacations still bring me chills.  The utter and complete fear that can be evoked by the idea that for up to 2 weeks, I would have to manage my son’s needs devoid of any routine, assistance, ability to access help, and in the midst of everything around me thrown off by the holidays and all that they bring, was paralyzing.  Most of the time the very few sources of help I had were unavailable.  My husband couldn’t take the entire time off from work.  It took weeks of planning, because I had to have a plan for every moment that he was unstructured.  Unstructured equals disaster much of the time for our kids.  One of the only things I could count on was friends who could take my young daughter for playdates, which at least would leave me with just one child to manage, not both.

Oh yeah, and it was Christmas.  There’s that.

So getting back to my Facebook and Twitter friends…like I said, everyone’s a bit different.  I love Christmas and New Year’s Eve.  We had our son home for 2 days, which right now is the best he can manage.  I had my usual rollercoaster ride – Christmas Eve I cried for my son, his suffering and the sadness of it.  That’s the one day a year I allow myself to do that.  Christmas day I was overjoyed as my daughter leaped and screamed with each gift she opened.  I hosted my parents and other family members with joy, and my son was there and behaved beautifully – a true blessing for us.  I played a little hooky from work a couple of days last week and focused entirely on my daughter and husband.

And now it’s back to routine.  I am relieved, frankly.  I don’t consider myself a person who relies on routine, but when it’s gone entirely for more than a few days, I do miss it.  I was up at 6:00 this morning, making breakfast and lunch to pack.  It felt really, really good.  How about you?

PS – that bit about playing hooky from work…don’t tell my boss here at HMEA.  HAPPY NEW YEAR!

If you’ve been following the news and have heard about the layaway angels this year, you’ve probably been touched by the wonderful things these strangers have done, by paying off the layaway balances of random people at random stores across the country.  If you’ve been following the HMEA Facebook fan page, you probably saw the recent post about the stranger in the parking lot who handed a teacher $70 to buy lunch for the special needs students at our school in Hudson.  Did you hear the story about the person who put $10,000 into a Salvation Army bucket a couple days ago?

Seems that random acts of kindness are pervasive these days – how refreshing!  I can’t believe how many days in a row I’ve turned on the news and heard stories of generosity and giving.  It’s too bad these kinds of stories seem to come only, or mostly, during the holiday season.  And, seemingly – if my 40-some years serve me correctly – they also seem to come mostly during times of hardship and crisis.  Right now is a case in point; we are facing some of the most difficult financial and economic struggles this country has had in decades.  So now, generosity abounds.  Coincidence?  Maybe it’s just that the media is covering these stories more?  Not sure.  Would love your perspective.

I wonder how many people conduct random acts of kindness throughout the rest of the year.  I want to believe the spirit stays alive January-November.  As a parent of a child with special needs, and a person embedded in the disability community, I can say that I witness these kinds of acts a LOT.  I include every level of kindness, from a smile of understanding by a person in line while I struggle with my son, to the volunteer who shows up at the Autism Resource Center unannounced, wanting and willing to do whatever is needed, to the behaviorist who stays an extra half hour to coach a parent through a meltdown of epic proportions, to the woman who called me in July and said she saw me at a presentation and wanted to reach out to thank me for making her aware of how to help someone in need with a disability.

So I’m the lucky one who gets to see these things, because I’m involved with the disability community – I know how great these things make me feel.  What about the person whose life is not impacted by a disability or year-round crisis?  There’s no question that the man or woman who loses their job suddenly gains a deeper understanding of others in their situation.  Often that prompts them to do something charitable, that they may not have done before.  We know that if a young person dies unexpectedly, or a terrible crime is committed, the neighborhood and loved ones rally to create an event that helps the family or that supports people in similar situations, like victim support agencies or the like.

These examples, however, are not random acts of kindness.  They are reactive acts.  Random falls into the category 0f proactive; done before they’re needed or expected.

I know that New Years Resolutions are passe these days; I still have yet to maintain one myself.  But I think I will put ‘RAK’ on my calendar every month; maybe pick out a few days a month.  Reminders to myself to carry on that wonderful, amazing, inspiring practice.  Yes, it starts here during the holiday season.  Let’s keep it going; will you join me?

Well, Thanksgiving is over and the start of the holiday season is officially here.  For those of us in the autism world, we got through last Thursday either with flying colors or near disasters.

So it goes every year – those ups and downs we experience are exacerbated for the next 5 weeks, and affect many more people around us, by virtue of the fact that the holidays are a time when we traditionally surround ourselves with our larger, extended families.  Many of those are people we don’t see other than once a year.

I’m one of those very lucky (I prefer blessed) people who has been surrounded by supportive, loving family ever since my son was diagnosed with autism 17 years ago. Never once have I been judged, criticized, ignored, isolated or insulted by my family. That is why it is so hard and confusing for me when I hear from so many others within my community of autism, who do not have support from their families. It’s appalling, frankly, and while my first response is anger and protectiveness toward my friends, I know that is an unproductive emotion and so I try hard to listen, that I might learn. I still haven’t learned much, except that I am incredibly grateful for what I have.

Family plays one of the most important roles in the lives of our children, both those with autism and our neurotypical kiddos.  Whether we are influenced positively or negatively, we are influenced, and that extends into our adult lives. Our relationships with our families shape us, in some ways define the outcome of our lives. Unless you are entirely without or withdrawn from your family, these influences can be daily.

But, when the holidays arrive and all those Aunts, Uncles, cousins, second cousins and people who claim they are cousins decide to renew their relationships for a few days, we are forced into having to try to explain our child’s challenges and unique needs to people we don’t care about and vice versa; trying to insert ourselves into the festivities even though we know it could be a disaster, and often receiving nothing but judgment or ridiculous advice about our parenting skills (because, clearly they’ve been able to assess the situation in the last 2 hours and the child’s issues obviously stem from us).

It’s no wonder so many of us dread the holidays. It’s hard enough to hang on to our sanity when everything is stable, when the community stays the same and routines are routine. When the energy and schedule at school is relatively even, when we only have 2 days off per week. Throw in the hubbub, the decorations, the music, the flashing lights, the pine smells; we don’t even realize how changes in the environment can affect us, let alone our children.

So it would stand to reason that this would be the time when we’d need our families to rally around us most. Years ago, I made the announcement to my sisters and my parents that all holidays would be spent at my home from then on, and everyone is absolutely welcome to come but travel to the homes of others was no longer an option. I wasn’t sure exactly how that would be received, but my family responded with “no problem, we totally get it, we’ll be there.” They knew, even without the details or any explanation. Wow. Now that is unconditional love.

It didn’t dawn on me until a bit later, of course, that this would mean I would forever be the one to have to cook, clean, and prepare for all the guests every holiday…my family is pretty smart, so my guess is that was a part of their motivation (kidding)! Regardless, every holiday is now full of joy and fun, and my son is able to be a part of it on his own terms. My husband and I can enjoy our guests and each other.

Traditions are so important to the holidays, but what good are they when they exclude our loved ones? Are they still worth keeping? If you’re pondering this question, let me help – the answer is NO. By excluding or causing stress to family members challenged by autism, you are creating a pattern of hurt, anger and separation that you risk being permanent. How is that ok? When the traditions within our family no longer provided the same beautiful, warm, memorable experiences, we simply changed it up by changing where we went – and guess what? Those same beautiful, warm, memorable experiences STILL CARRY ON, just in a different place.

Thank you, Mom, Dad, my 3 sisters and their families, for surrounding us with love, acceptance, support, and for understanding that the holidays are both exciting and incredibly frightening for us; and for removing that fear with your understanding. Thanks for helping prep and clean for Thanksgiving – we didn’t even break a dish this year! Can’t wait until you all arrive for Christmas! PS – both sides of the extended family are wonderful, too. Love you all!