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Monday, April 23, 2012

Identity... the way I see it:

I hope everyone felt enlightened by the parts I shared from Mrs. Eustacia Cutler’s work in my last post. Here is what I took away from that experience:

Each of us in our beautiful little family of three has our own identity. Our family unit has its identity as well. Autism forces both the individual and family identities to change, but it should not absorb them. It is SO easy to get sucked into the world of autism that both the individual and the family’s identities can get lost. Eustacia often speaks of “the sacrifices” her other children made in order to accommodate Temple’s needs. It's an inevitable process that can't be avoided or denied.

Kanner described the tendency of individuals with ASD towards “self isolation” in his publication   CHILDHOOD SCHIZOPHRENIA SYMPOSIUM, 1955. 6. EARLY INFANTILE AUTISM, 1943-55 (American Journal of Orthopsychiatry Volume 26, Issue 3, pages 556–566, July 1956). Dr. Kanner went further to describe, “the extreme nature of their detachment from human relationships separated the appearance and behavior of these (autistic) children in a fundamental fashion from other known behavioral disturbances,” (p. 556). To read more, visit http://onlinelibrary.wiley.com/doi/10.1111/j.1939-0025.1956.tb06202.x/abstract

Regular exposure to “the real world” can help draw the individual out of their own world of autism and keep the family grounded in their own identities. In order to remain grounded outside the world of autism, both Temple and Eustacia stress the importance of FORCING individuals with autism and the family against the gravitational pull of the safe comfort zone—within reason, of course. At the conference, a grandmother stood up to ask Eustacia this question: 
“I want to take my grandson with ASD to so many places but he just freezes and won’t go.” 
Eustacia’s answer, “You HAVE to keep trying. Even if you just get him in the door, it’s progress!”

Temple frequently refers to the incredible amount of “typical” activities she was exposed to throughout her lifetime: school, neighborhood play, church, and jobs even as a pre-adolescent. She credits these as the basis of her long-term successful integration in the "real world." One of the many jobs she had included, of course, caring for the animals on her aunt’s ranch. Temple didn’t WANT to go to the ranch to begin with, but her mother gave her no option. No one could predict it would turn out to be a life changing experience for her: a gate to a future few could have ever imagined for the ‘autisitic’ girl named ‘Temple.’

I believe the process of drawing the child (the parent AND the family) out of the world of autism gets easier as they move from the initial diagnosis to the subsequent barrage of treatments and therapies… then, and only then, can one come to terms with one’s “new normal,” one’s new identity.  John Fuller said it so well in his article God in Autism (The Washington Post ‘Guest Voices’ April 15, 2012):
I used to have the 'daddy thing' down pretty well. My wife and I had five children, and they were all excelling. We were, in many ways, a 'model' family. Things changed a few years ago when we adopted an infant from Russia... As he approached the age of two, we could tell something serious was going on. Zane had no verbal abilities. He avoided eye contact with others. There were frequent, uncommonly intense temper tantrums… Zane routinely banged his head on objects... We were referred to a child neurologist… who said… ‘Zane is definitely on the autism disorder spectrum (ASD).’ ‘Shell-shocked’ describes those first couple of months ... After several months of serious research we finally found some starting points that helped Zane … The help came at a price… It meant learning to live without much privacy. Our home became staging grounds for a team of therapists who worked with Zane … After one therapist left, another arrived and took her place. 
Through the early years we had on-going occasions to re-learn our parenting, and to let go of ‘normal’ expectations for our son.
Our family’s subsequent journey through the world of special needs has made our lives messier and, in many ways, more difficult – but God has used these experiences to teach us firsthand lessons about love, commitment and compassion.”(see full article in my earlier re-post on this blog)

He articulates SO clearly what it’s like to have to make that shift from one identity to another…. We found ourselves in a similar spot just a year ago. April 2011 rolled around and we made a huge shift as a family: we decided to be as open and honest as possible with everyone about our little man’s diagnosis and let the chips fall where they may. I would say that’s when we found out who our “true friends” really were. Several relationships and friendships were severed as a result. Our identities were slowly being forced to change.

Yet to our surprise, once we made this shift we were embraced by a whole new community: the autism community! This was a community where NO ONE judged our parenting based on our son’s behavior. This was a group where, more often than not, we’d hear, “Yeah, I know what you mean!” instead of, “Oh… well, have you tried reading to him to see if he’ll start to speak?,” or, “Have you tried ignoring him?,” or, “Maybe you should just lock him up in the bathroom,” “Have you tried a punching bag?” and “Well! Now we all know who runs the show at YOUR house!” {and, yes, these are ALL things that people-- friends and family-- actually said to us}

The culmination of our shift was going to the walk for Autism Speaks. Seeing ALL of those people going through the same experience was dauntingly refreshing. WE WERE NOT ALONE!!! Driving around on World Autism Awareness day we felt a part of a much bigger thing: the autism community.  It all became crystal clear to me earlier this school year when it was called to  my attention that I was too vocal about my son’s disability at my place of work. In that instant I not only felt misunderstood, but I felt offended. Upon a second conversation things were clarified: this is who I am, this is who my family is, the autism community is our identity! Being asked not to identify myself as such would be the same as asking me not to speak of the fact that I am a Latina.

Yet autism does not define our family. I am still who I am and my husband is still who he is. I try, as often as I can, to see my little man as just a four year old boy. Hyper, curious, weird and did I say hyper? Eustacia says she kept her identity by going to weekly therapy (alone) and by taking vocal/singing lessons which kept her in her own world, even if just for a short time each week. After being diagnosed with high blood pressure and being at the max for medication for my migraine and other issues, I decided it was time to remember who I was. Yes, I am a mom, but I’m still ME. I am still my husband’s wife. I am still my sisters’ sister and my mother’s daughter. I HAVE to take the time to keep one foot in that world, lest I get lost in the world of autism. It’s who we are, but it can not DEFINE who we are. My little man is just a great kid who loves to be active, loves the water, loves airplanes and trains and loves to be loved. I am still the woman who loves to be pampered by getting facials and massages and I just love to ride my bike! My husband is still the highly intellectual music/movie/technology buff, tequila aficionado and friend who enjoys a good meal, good conversation and good drinks with an equally intellectual friend. Keeping one's identity while also navigating the autism journey is a careful balancing act that is not easy but certainly worth the effort!

John Fuller goes on to say: 
“I’ll admit that while it is with some reluctance that I’ve embraced our status as a special needs family, God has used our precious boy in many profound ways. The lessons have been difficult, but the rewards have been far greater… As parents we’ve had to let go of plans and expectations. It’s through this process that Zane has taught me to let go of my selfishness. I’ve released most hobbies and outside pursuits as my wife and I have spent most of our time and energy to date helping our son just get to and through the second grade… All of us – including those with special needs, the elderly, the orphan, the preborn – have inherent worth because we are uniquely created by God for a purpose.”

And what does the Bible say about this topic of identity???...... Well, in Genesis the Bible tells us that we are created in His image (Gen. 1:27). Like our biological parents passed on their genetic make up onto us, the Lord Himself passed on His attributes to mankind when He first created us in the Garden of Eden. However, as born-again believers, we have CHOSEN our identity by believing in Christ. We have chosen to believe in Him and, therefore, be a part of His kingdom because He chose us first (John 4:19). THIS should be our foremost identity: children of God.

I hope these words will be a blessing to your life!

Who or what marks YOUR identity?

In Spanish: Danilo Montero- Yo Se Quien Soy Yo

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