Halloween

Ah Halloween....a time of trick-or-treating, parties, fun!  Unless you have a child on the spectrum that is.  Not to be a killjoy but Halloween marks the beginning of the holiday season, which can add additional stress to the already stressful life of those with special needs.

When Tyler was younger we INSISTED that he go trick-or-treating like every other kid.  After all, we wanted him to have every typical experience that every other child was able to have.  So....we dressed him up (got kicked in the process)....watched him absolutely hate whatever it was he was wearing....dragged him out the door (still kicking)....gave him a pumpkin bucket (for him to hit us with)...walk to a neighbors door (which he kicked)....have him hand them the pumpkin and walk away (still swinging).  We repeated this "fun" about 3 more times before we said we had all had enough for one evening.  We tried this for a few years before we got the hint that maybe this wasn't his idea of a good time.  

I don't mind that we TRIED, after all you should always TRY, but perhaps we should have adjusted sooner to something more in his comfort range.

Another interesting topic that comes up at Halloween is whether a costume is "offensive" or not.  Specifically it was reported that Shawn White (snowboarder) dressed as "Simple Jack" from the movie Tropic Thunder.  To quickly explain, Ben Stiller plays a fading actor who once took a role as "Simple Jack", much along the lines of Forrest Gump or I Am Sam.  He plays a mentally disabled young man.  The movie bombs and he is ostracized for how bad it turned out.  Ben Stiller's character is a parody of a struggling actor trying to land that one memorable performance.  In fact, Simple Jack is a parody character being played by a parody actor.  I read an article and it explained that the Special Olympics made a statement that they were disappointed and felt that this characterization was harmful.  I think that's fair.  Shawn apologized and said he meant no harm to anyone in the special needs community.  I believe that too.  I don't think this is the sort of thing we should vilify him for quite honestly.

So where is the line between parody and mockery?  That is not something I can answer.  I know that personally I consider intent in someone's words or actions.  Shawn, I can only assume, was trying to be clever with a funny movie character parody.  The problem with that is, if you never saw the movie, he looks like he is playing a mentally retarded person for Halloween...which isn't funny at all.  

As special needs parents we are going to be more sensitive to things for sure.  My advice is to consider the overall character and intent of a person's actions before passing judgement.  Mistakes happen even to well-meaning people.

Enjoy a safe and happy Halloween!    Tom 

Defining Affection and Love

Relationships are complicated even in the best of circumstances.  "Typical" individuals can have a difficult time expressing themselves, especially in a way that other people WANT them to.  Think about it, we all interpret expressions of love from our own viewpoint.  After all, it's what our heart knows!  So when someone else's expressions don't fit into that mold, we may feel slighted, or misinterpret what those things really mean.

I often relate things to the movie "Rainman" because while the movie is certainly not perfect in it's depiction of special needs relationships, it does have some shining moments where it pinpoints things exactly.  Case in point, Charlie (Tom Cruise) teaches his autistic brother how to dance.  It is a sweet moment where the brothers connect in a new and profound way.  At the end of the song Charlie reaches out to hug Raymond, who immediately recoils and panics.  Charlie is left feeling confused and dismayed.  But here is the important part, by the end of the journey Charlie learns how to be affectionate with Raymond on HIS terms, and the two were much happier.  Charlie learned that by caring for him and about him, along with very subtle physical contact, he could gain Raymond's trust and affection.

Let me relate this to my own Tyler.  Right now Tyler is in a point of his behavioral cycle which is not his happiest or warm-and-fuzzy-ist.  Of course when the family sees him at church on Sunday we are excited!  We miss him and we want to squeeze him!

At the moment, he isn't sharing our enthusiasm so he gives us a quick hug and heads for the exit to get back to his home.  We would be fooling ourselves to say that, while we fully understand it, we don't feel hurt by it.  We want him to understand OUR love and OUR affection and we want him to give it back!  But so often being on the spectrum doesn't translate that way...or perhaps at all.  We tell him we love him, give him all the hugs and kisses he can stand, and we send him on his way.  Right now its what he needs, and that is ultimately what matters most.

So take heart if the loved one you care for doesn't quite receive or reciprocate affections the way you would hope they would.  Most likely it isn't personal.  Remember that the messages they process are way different than how we process them.  To be successful as caregivers we have to remember to love them in terms that they can understand and trust, and if you can do that, it may just open the doors to a better relationship.

Be well and God bless.

Tom 

Cecil and David Rosenthal

Cecil and David Rosenthal went to church on Saturday in a quiet, sleepy town near Pittsburgh.  As special needs brothers in their 50's they were inseparable.  They also loved to attend their church, where they were well-liked and appreciated.  They never missed a Saturday service.  They were loving, gentle, and inspiring men.

On Sunday I couldn't help but watch my son as he was sitting in church.  It was impossible not to think about the synagogue in Pittsburgh and how those worshipers were in their sanctuary just like him.  They felt a sense of safety and belonging.  They were innocent, just like Tyler.  And as it turns out, they were vulnerable, just like Tyler.

It's a nightmare that as special needs parents we think about more often than we would like to....what if this happened in my church?  What if this happened at his school?  What if this happened to my son?  How do I protect him?  

Cecil, David, and Tyler rely on all of us to provide a safe world for them.  They rely on US to be their voice.  When they aren't getting the services they need, we have to stand up for them.  When facilities don't adequately provide for their care, we have to stand up for them.  When laws need to be evaluated and changed, it is up to all of us to fight for that change.  Now more than ever as caregivers we must make our voices heard.  Every year the need for quality care increases while the funding continues to be decreased.  Every day the negative rhetoric intensifies and the positive messages we need to hear grow more silent.

Cecil and David need to remain in our hearts but more importantly, they need to start being at the core of who we are.  Our decisions every day....how we treat each other...our priorities...our leaders...need to start and end with values like compassion, faith, and understanding.  Without these values we cannot honor Tyler or Cecil or David.  We have to be willing to be the voice for what is right.

Our boys are depending on it.  Cecil and David....this is for you.  

Why Words Matter

Words matter.  Words can be a powerful and wonderful tool to inspire others.  Words record who we are and where we have been.  We can use words to comfort our friends in their time of need.  How often does a smile and a kind word from a stranger make us feel good about ourselves?

Some of my fondest memories in the years Tyler was at home involve times when strangers expressed kindness and compassion toward Tyler.  I remember being in a restaurant and an older couple approached our table on the way out.  The gentlemen asked if he could give Tyler a few dollars because he was inspired by how well behaved he was.  Those are the experiences that stay with me as though they happened yesterday.

Words can also be devastating.  I remember how we felt when a caregiver told us that a young boy and his father made fun of Tyler when she took him out to eat.  Fortunately Tyler didn't realize he was being mocked, but it hurt to know that someone would do that to him.

There are many of us who are leaders in one form or another.  Some lead families, congregations, businesses, towns, states, or countries, and I truly believe it has to start with all of us.  We have to be aware of what we say, and how we say it.  We fool ourselves that people like Tyler don't hear us or understand us, but they do.  They are hearing what we say, and watching what we do.  That's why I believe we need to speak to each other like our sons are listening, and our daughters.  When we stand before them and represent something, we owe it to them to do it with dignity, love, and humility.  Unfortunately it seems we are seeing less and less grace and more and more contentiousness.  For Tyler, and for everyone who so desperately needs us, we have to stop this cycle.

Words do matter.  Its time that we remember that,  and its time that we use our words to bond, and to heal, and to teach the right things.  Our children deserve that.  Tyler deserves that.

Be well and God bless.   Tom 

Not Gonna Miss You

Good Evening,

I try on occasion to recommend movies or documentaries that I feel somehow break uncharted territory in the caregiver experience.

See "I'll be me" for an amazing journey.  You will nod your head, laugh, and cry.  You will appreciate how an amazing and complicated man can suddenly become vulnerable and dependent on his family. And as you watch this transition you will recognize every one of the emotions which range from loyalty to exhaustion.  From courage to fear.  From hope to reality.

Glen Campbell was a complex and talented man.  He was far from perfect.  But when a diagnosis of dimension threatened to end his life story, he and his family decided to take charge of the final chapter.  The result of this decision was a perfect representation of what a caregiver and the cared for experience as the disease ruthlessly marches on.  It's a story of love, devotion, decline, and loss that we will be forced to face for ourselves,  But it is also a testimony of what it truly means to be devoted to a person with special needs.