Tag Archives: hope

On the Giving Up of “Hope” for My Disabled Child

22728733_10212165871236890_6396846401820621578_nA couple of weeks ago, I listened to a conversation between parents of autistic children. The first – a mother and father – were relating their experiences as parents of a severely autistic, nonverbal child with intellectual disability and discussing how they love, enjoy, and accept their son as the person he is.

The second – a mother of an autistic adult – interrupted them with oversimplified advice to “just [insert unsolicited opinions] and he’ll be fine”, noting that her child is “now married and doing fine”. She finished with “You’ll see. Don’t give up hope.”

The parents of the severely disabled child were a class act while struggling to not argue with the woman they clearly saw as well-intentioned. But I knew what that patience was costing them on the inside. I know what being on the receiving end of such advice really feels like.

And it has nothing to do with resentment that her child is doing so well in life.  It has everything to do with a pervasive belief that somehow accepting the limitations of a severe disability is “giving up” on a child. You hear this mantra from friends, neighbors, educators, etc., but it’s worse when it comes from a fellow special needs parent.

My son has a severe disability that places him in the “highest needs” category. He is considered functionally nonverbal, severely autistic, and intellectually disabled. He is old enough now and has had enough supports in place that we can make some realistic, informed predictions about future supports and transitional planning. Is it possible we’ll be wrong? Sure. But with all things considered, it’s not likely.

What I want to know is how is my acceptance of who he is “giving up” on him? The implication is he’s somehow a failure if we do “give up” and he doesn’t achieve what others believe is necessary for him to be a successful human being. Is he a failed soul should he not grow up to go to college or marry? Is he our failure if his brain simply isn’t wired to do those things?

Is a paraplegic a failure if his spinal cord fails to regenerate?  No?  Then why is my child a failure if his brain fails to form neurological connections? Where did anyone get the idea that all we have to do is “believe” to alter a person’s physiology?

If you know or love someone who overcame early developmental challenges but went on to live a fairly typical life, that’s great. I’m honestly very happy for them.  It makes life easier if you can go that route.  But do the rest of us a favor and cease insinuating we aren’t doing something right if it’s not in the cards for our loved ones. My son’s future is ultimately not going to be the result of “just believing” in him. I already believe in him. I believe he is delightful. I believe his soul is beautiful. I believe he has dignity. And, unlike those who tell me to not “give up hope”, I believe he is worthy – just as he is.

So, am I giving up “hope”? You’re damned right I am. I’m giving up hope of him being anyone other than the amazing person he already is. I’m giving up “hope” in unrealistic dreams of futures he isn’t likely to have, and I’m replacing it with genuine hope for him to be the happiest him he can be. And I’m doing that with all of the IEP goals, therapies, love, and exposure to his world that I can pack into his formative years. But in the end, he’s going to be who he is meant to be. It’s good enough for me.  It ought to be good enough for everyone else.  

And, no.  I’m not going to give up hope for that.

Morning Has Broken: We Have Words

 “There’s something happening here.  What it is ain’t exactly clear…”

-Buffalo Springfield

Progress is deceptive.  When you keep your eyes on the road ahead, the journey seems oh-so-long.  Long enough that you perpetually wonder if you’ll ever reach your intended destination.  It’s only when you stop going and going and stop to look back that you realize the distance you have already traveled.  And, sometimes, that realization is all you need to get a second wind.  To find what seems impossible may be in the cards for you after all. 

Callum started Pre-K ESE in the spring, right after he turned three.  Placing him in that room on the very first day was the scariest thing I’ve ever had to do.  Other parents, teachers, and therapists kept telling me that I would be amazed at what the structure of the classroom would do for him in terms of language and social development.  I don’t think I really believed them.  Not because I don’t have hope for my child.  I do.  It’s just that hope can sometimes be a dangerous thing.  It can let you down.  With a severely developmentally delayed child, you have to walk the nearly invisible line between acceptance for what might be and hope for what could be.  When you do one, you risk denying your child the other — in an endless cycle of “I need to do better”. 

But since returning to school this fall – to the same teacher’s class – we cannot deny that Callum has made progress.  On all fronts. 

A few weeks ago, we began receiving reports of words from school and daycare.  And not just randomly repeated words out of context.  But words Callum knows and made the choice to use.  “Peesa” (pizza), “mi” (milk), “pees” (please), “I sowwy” (I’m sorry), “tantu” (thank you), “goo ja” (good job), “nana” (banana), “come ah” (come on), and more.  It seemed to happen all at once. 

But it hasn’t been just words.  There’s been a kind of strange give and take in our verbal interactions with him — even when he’s just babbling.  His babbling sounds like sentences in a foreign language.  And they have a distinct tone — silly, happy, etc.  The amusing one is when he is displeased.  You can tell you’re in big trouble with that one as he furrows his eyebrows, raises his voice, and emphatically babbles his displeasure.  That one inevitably follows being told that he may not have more chocolate or jump on the couch.  Or both.  The important thing is that he is clearly responding to what we say.  He responds when asked a question and usually when told to do something.  And it’s often like a conversation.  It’s different from before – in some way I can’t exactly qualify.  But everyone sees it.

And then there are the social differences.  His teacher, whom we think the world of, reports that he is understanding and following classroom routines.  He sits in circle time, follows the yellow line when walking, and holds is backpack.  No, he isn’t mastering any academic goals yet.  But social conformity precedes learning.  It’s a foundation on which we can build.

He’s also getting into things more now and starting to get in trouble.  It gets harder each day to look dutifully stern when he gets a naughty twinkle in his eye before attempting yet again to break the rules.  He knows he’s being bad – and he is delighting in that knowledge.

And when he isn’t looking, so are we.

If I had to boil it down to one description, it would be this:  Callum — the boy — is in the room with us more and more, not just his body.  He isn’t playing quite yet, but he has shown more interest in some toys.  He is requesting things other than food (such as bringing us his shoes when he wants to go for a drive).  He is swaying to music on occasion.  And discovering that he can open things and make a mess.

Callum, in short, is emerging from behind the wall of autism. Yes, I know the wall will always be there.  I know it is a part of him.  He will always be different, and he will always slip behind that wall sometimes.  But he is learning that things on our side are kind of cool too.  He is seeking us out and realizing that we will consistently meet his needs — especially if he makes them known to us.

And with this comes a level of wonder you can’t begin to know unless you have a child whose developmental milestones aren’t guaranteed.  Each one met is precious and must be celebrated without the assumption of the next to come.  Living in the moment takes on new meaning when patience becomes a choice over a virtue.

No, nothing this little boy does is taken for granted.  Every word, every interaction, every anything he didn’t do before becomes a blessing.  And that, in itself, is a blessing I could have never anticipated just a few short years ago.

Yes, we have words.  But with that, we have so much more.  We have hope.  And a song in our hearts — whose tune we have sometimes forgotten.

Morning has broken, like the first morning
Blackbird has spoken, like the first bird
Praise for the singing, praise for the morning
Praise for the springing fresh from the Word

–Eleanor Farjeon

Flappiness Is to “I Wish I Didn’t Have Aspergers”: #AutismPositivity2012

A few days ago, you or someone like you googled, “I Wish I Didn’t Have Aspergers”.  I have thought about you ever since.  Wondering what is happening in your life to cause you so much distress over something that is simply a part of who you are.  For I know there must be something, and it is obviously hard.  No, I don’t know your name.  I don’t know where you live.  I don’t know how the world has treated you.

But I have seen the pain in the eyes of my students on the spectrum.  As a teacher, I have witnessed the aftermath of your peers’ indifference, amusement at your social missteps, and even cruelty.  I have watched you try so hard to fit in to a world that doesn’t understand you any more than you struggle to understand them.

You try to make small talk, but it isn’t received as you intended.  You share your opinion in class, and are bewildered by their laughter.  Even some of the teachers and other adult staff sometimes seem annoyed.  There are all kinds of unwritten rules about what to say, what to do, how to look — and no matter how hard you try to get it right, you always seem to get it wrong.  The thing that people don’t seem to realize is that – inside – you are just a person who wants the same things everyone else does.  Friendship.  Respect.  Fun.  To share your interests and experiences with others.  Perhaps to meet someone special.

But right now I’m guessing you don’t have many of those things.  And you’re probably wondering if life is always going to be this hard.  If there will ever be a place you belong.  If you will ever be able to sit among a group of people without a running dialogue of worry, embarrassment, and checklists of those unspoken rules running through your head.

Clearly, you want to be “normal”.

Well, I just so happen to be someone you would consider “normal”.  (Whatever that is.  I’m here to tell you that I’ve known a lot of “normal” people.  Quite frankly, we’re all us strange – this mixed bag of humanity.)  But I make friends easily.  I understand those confusing social cues that seem to elude you.  And I have never lived in daily fear of being bullied and antagonized.  So, no, I have not lived your life, and I don’t know what it is like to be you.

But being what those in the autism world call neurotypical, I have made my own observations of the differences between people on the spectrum and people like myself.  One of the things autistic people are characterized by is having an affinity for detail.  Many of you notice so many things that neurotypicals never will.  It’s a really cool ability.  We NTs, on the other hand, aren’t as observant.  We tend to be blind to those who are different.  And, even when they are pointed out, many of us still fail to really see them.  A kind of emotional blindness, if you will.  And, it really is not intentional.  It’s just that it sometimes takes an extraordinary experience – such as parenting, loving, knowing, teaching, or working with someone on the spectrum for our eyes to be opened.  But without that experience, far too many of us remain blind to those right in front of them – their differences, what they share in common, what they need to navigate the world just a bit easier, and what they have to contribute to our world.

Yet some of us have had that extraordinary experience.  Some of us now have a new set of glasses with which to see the world.  As one who counts herself among them, I am so very grateful for that.

I’m so sorry that so many of us still have not had our eyes opened.  I’m sorry for the frustration and hurt that we have caused you – that would make you wish you were somebody other than who you are.  Yes, you do stand out.  But you know what?  So do some stars.  Some are just brighter, more colorful, and more interesting than all the other not-so-remarkable stars in the universe.  When I think of you, of others I have known like you — and my precious amazing boy, also autistic – I see stars.  And to me, and other NTs like me – whose vision has been strengthened – you are beautiful.

Right now, you may be looking around you and wondering where the heck we all are.  Are there people who will accept and appreciate you?  And are there others like you who have gone on to happy and fulfilling lives, having survived the very difficult years you are enduring right now?

The answer, I am so very pleased to tell you, is yes.  We are all over.  We are in this country and others.  We are in large cities and small towns.  We are universities and the workplace.  Churches and advocacy organizations.  And you may be too young to have an opportunity to break away from your small corner of the world to meet us all.  But we are here.  And we have our hearts, minds, and arms open and waiting for you.  As the saying goes, “It gets better.”  You just need to hang in a bit longer, learn as much as you can, and then step out into the world and begin bridging those connections.

In the meantime, you may be surprised to know that there is an entire online community and autism/Aspergers blogosphere already available to you.  Autistic/Aspie youth and adults, sympathetic NTs, and experts.  Websites, blogs, chat rooms, forums, support groups, Twitter, Facebook pages, and much more.  You would be surprised at the warmth, friendship, and understanding available right now — today — if you will just log on and seek it out.

For more messages of hope to you from the autism blogosphere, please visit the Autism Positivity Flash Blog.

It’s a big world out there.  And you haven’t even seen 1% of it.  There are happy and successful people just like you who are all too happy to tell you that there is a lot to look forward to in life.  Seek them out.  Connect to them.  Follow their advice.  And, hopefully, one day you will be in their shoes — proving to a young person just like yourself that there really is a place for him/her in the world.

For it is there — waiting for you to claim it.

If you would like to read more messages of hope from people in the autism community, please visit the Autism Positivity 2012 Flash Blog.

Book Review: Letters to Sam

One of the things I love about being a librarian is finding books I didn’t even realize I had.  Yesterday, while perusing the card catalog, I decided to do a search on autism.  I came across a book that I undoubtably had bought at some point, but didn’t remember.  It is titled Letters to Sam: A Grandfather’s Lessons on Love, Loss, and the Gifts of Life by Daniel Gottlieb.  I started skimming it and, many tissues and sticky note bookmarks later, found a real treasure.

When Daniel Gottlieb, a psychologist, was 33 years old, he was paralyzed in a car accident and became a quadriplegic   He regained some use of his arms and went about living a full life, continuing his practice and adjusting to his new circumstances.  Twenty something years later, his daughter had a child, Sam, who quickly began showing signs of autism.  With medical complications from his paralysis that made Gottlieb worry he might not be around much longer and, worrying that Sam might not develop quickly enough to understand what he wanted to teach him, Gottlieb began a series of letters about life, love, and adversity.  In his letters to young Sam, Gottlieb shares valuable lessons learned about being different and how to navigate the world.  He is honest with Sam about the challenges he faces with autism and honest about his own painful experiences following the accident.

The advice that he gives Sam could come only from someone who understands being different.  In a place now where we don’t know what kind of future our two year old autistic child will have, Gottlieb’s instructions on how to be happy in a world that isn’t made for differentness are a beacon of hope for me.  I loved the gentle, yet respectful honesty of this grandfather to his cherished grandchild and was encouraged by Sam’s progress as he grew older.  Hope is a precious commodity in a family impacted by autism.  This wonderful collection of letters inspires hope and reminds me that we will survive what we fear so much right now.  Highly recommended.

P.S.  Gottlieb has another title that I look forward to reading as well- The Wisdom of Sam: Observation on Life From an Uncommon Child.  (Kindle version only .89!)